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BIOETHICS

IN THE 21st CENTURY

Edited by Abraham Rudnick

Bioethics in the 21st Century

Edited by Abraham Rudnick

Published by InTech

Janeza Trdine 9, 51000 Rijeka, Croatia

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First published November, 2011

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Bioethics in the 21st Century, Edited by Abraham Rudnick

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Contents

Chapter 1 Introduction to Bioethics in the 21st Century 1

Abraham Rudnick and Kyoko Wada

Chapter 2 End of Life Treatment Decision Making 7

Juan Pablo Beca and Carmen Astete

Chapter 3 Ethics Related to Mental Illnesses and Addictions 27

Barbara J. Russell

Chapter 4 Resource Allocation in Health Care 63

Giovanni Putoto and Renzo Pegoraro

Chapter 5 Ethics and Medically Assisted Procreation:

Reconsidering the Procreative Relationship 79

Laurent Ravez

Chapter 6 Stem Cells: Ethical and Religious Issues 87

Farzaneh Zahedi-Anaraki and Bagher Larijani

Chapter 7 The “Cultural Differences” Argument and Its Misconceptions:

The Return of Medical Truth-Telling in China 103

Jing-Bao Nie

Chapter 8 Nanotechnology and Ethics:

Assessing the Unforeseeable 121

Monique Pyrrho

Chapter 9 Speculative Ethics:

Valid Enterprise or Tragic Cul-De-Sac? 139

Gareth Jones, Maja Whitaker and Michael King

Introduction to Bioethics in the 21st Century

Abraham Rudnick* and Kyoko Wada

Departments of Psychiatry and Philosophy and Faculty of Health Sciences,

The University of Western Ontario

Canada

1. Introduction

Health care is developing rapidly. So are its correlates, such as health care technology,

research, education, administration, communication, and more. Such change requires ethical

deliberation, as change that is not ethically guided poses unnecessary risks. This may be

particularly true in relation to health care, which impacts some of the most central domains

of human life. Bioethics addresses issues of health care ethics. It consists of approaches that

attempt to resolve moral conflicts, viewed as conflicts among moral values that may each be

acceptable in some circumstances but that require prioritizing when combined with other

moral values in particular circumstances. Such approaches include the application of

theories such as consequentialism, which refers to outcomes (such as happiness);

deontology, which refers to duties or intentions (such as the obligation not to lie); virtue

ethics, which refers to character features (such as honesty); principlism, which refers to the

four principles of upholding autonomy (self-determination), beneficence (best interests),

non-maleficence (least harm), and justice (as fairness, for example); and more (Beauchamp &

Childress, 2009; Rudnick, 2001; Rudnick, 2002).

Bioethics ranges across many areas and its scope is still broadening. Some of its emerging

areas address organizational bioethics, global bioethics, and much more. This book focuses

on a sample of emerging as well as more established areas of bioethics. The chapters were

selected according to various considerations, such as interest of authors. Yet in spite of not

being exhaustive, this book illustrates the range and impact of bioethics in the 21st century.

As part of that, some of the chapters go beyond fact and theory into some speculation (the

chapters with more speculative topics can be found near the end of this book). We think this

is necessary for bioethics to be constructive, recognizing that speculation must be checked

by common sense as well as by known fact and theory. Indeed this is how much of bioethics

proceeds (Rudnick 2007).

There are areas of bioethics that are not covered in this book, such as neuroethics,

enhancement ethics, ethics of genetics, and more. We cannot touch on most of them here.

Still, we would like to highlight neuroethics as a likely paradigm of an emerging area in

bioethics. Neuroethics can be defined in part as the ethics of neuroscience

(http://en.wikipedia.org/wiki/Neuroethics). More specifically, it can be viewed in part as

* arudnic2@uwo.ca

Bioethics in the 21st Century

the ethics of brain assessment and manipulation with advanced technology, such as

transcranial magnetic stimulation (TMS) and (electric) deep brain stimulation (DBS); these

technologies may induce important intended and unintended brain changes. Such brain

assessment and manipulation has implications for personal identity, self-determination,

social influence on health care, and more. Much if not all of this is not new, yet in

neuroethics it is perhaps more prominent than elsewhere and may require new approaches

and solutions. Such emerging bioethics may contribute to ethics more generally, be it by

generating new problems and/or by generating new solutions to old problems that

emerging and established health care practices and related technologies raise in variant

forms. We hope this book will be part of this contribution in the areas that it addresses and

beyond. The editor (first author of this introductory chapter), would like to point out that

due to the publishing process of the book, he cannot take full responsibility for the

substance and style of this book. Such open access publication is a fairly new part of

bioethics in the 21st century, and as such the book exemplifies an aspect of its subject matter.

2. Overview of chapters

In chapter 2, Beca and Astete discuss the issue of decision-making in relation to patients

who have no plausible prospect of recovery. They focus on examples where life support

may no longer be meaningful but rather may prolong the suffering of the patient and the

family members. As is illustrated in one of the four examples presented, some family

members may hold an unrealistic hope for recovery, no matter what the circumstances may

be. Also, it can be stressful for healthcare professionals to withdraw or limit any kind of life

prolonging procedures. The authors apply the principlist approach to grapple with the

difficulties involved in end-of-life decision-making (although distributive justice as related

to resource allocation can be viewed as part of principlism, it is not discussed in this

chapter). They argue that in terms of autonomy, the patient’s values must be respected;

however, the patient may not be fully capable of making his or her own decisions, and the

substitute decision maker (SDM) may not necessarily know the patient’s values.

Considering a variety of difficulties involved in this decision-making process, the authors

argue for shared decision-making by several agents, such as healthcare professionals and

ethics representatives, in addition to the patient and his or her SDM. Shared decision-

making pursues a balance of benefits and burdens, which may secure the patient’s best

interests. Such an approach may appear to have an emphasis on beneficence more than on

autonomy. But, as is the bioethical standard now, the authors’ argumentation portrays

beneficence as what is good for the patient based on his or her values (when known). Hence,

autonomy trumps, unless neither the past nor the present values of the patient can be

known (in which case, autonomy may be irrelevant).

In chapter 3, Russell argues that ethical considerations involved in mental health and

addiction settings do not stand alone but co-exist with clinical, legal, organizational and

other considerations. Seven examples involving ethical complexities are presented in the

beginning to illustrate issues arising from the care of those with mental illnesses and/or

addictions; these issues are addressed later in the chapter. These examples are not as

dramatic as may be often displayed to the general public through media, but are rich with

issues encountered in daily healthcare practice, education and management. In these

examples, we encounter patients as well as a wide range of other agents, such as their family

members, a landlord, a judge, a clinical director of an organization, and others who are

Introduction to Bioethics in the 21st Century

related to the patient through their mental health and addiction problems or otherwise.

Following discussion of being humane, being a person, being a community member, and

being a care provider, all of which comprise ethical considerations, the author proceeds to

discuss why other factors matter ethically. Among these are science, technology and clinical

factors, law and regulations, organizational contexts, and systemic factors, such as stigma

and discrimination, the social determinants of health and the health care system.

In chapter 4, Putoto and Pegoraro discuss resource allocation, which is among the most

important and pressing issues in healthcare today, both in developed and in developing

countries. As resources are limited, we must make a difficult choice to achieve the goal of

efficient and effective healthcare. Rationing, defined by the authors as “the distribution of

resources between programmes and persons in competition”, needs to be done explicitly

and at various levels, i.e. from policy making to individual care. However, as the authors

argue, we are far from reaching a consensus in terms of who decides and what the guiding

strategies should be. Several approaches to rationing are possible. Experiences of a few

jurisdictions are classified into three models. The first model, which is employed in Oregon

(United States), explicitly identifies a list of treatments to be publicly funded. The second

model, which is employed in the Netherlands and Sweden, adopts some principles to

identify available treatments or priorities in the provision of healthcare. The third model,

which is employed in New Zealand and Great Britain, relies on specific guidelines

regarding treatments, and the rationing is done at the local and individual levels. However,

as the authors indicate, none of these models are without problems, and no matter what

model we use, there will always be ambiguities. More discussion on rationing is required

regarding resource allocation.

In chapter 5, Ravez analyzes ethical criticism of employing procreation technologies. He also

presents his proposal regarding the issues arising from these new technologies for couples

who want to have a bio-child. From his review of literature, particularly that written in

French, he classifies ethical criticism of medically assisted procreation (MAP) into three

types: medicalization of procreation, the dissociation of biological and social filiation, and

the controversial status of the embryo. Ravez recognizes that these criticisms are not without

counter arguments and may not necessarily be limited to MAP. Moreover, these criticisms

may dismiss the effectiveness of these new technologies which may enable a couple to

satisfy their legitimate desire to have a bio-child. He claims that we should not deny the

suffering of sterile couples and proposes a framework to address the ethical issues involved

in MAP. According to him, first, we must listen to couples who are suffering from sterility

and discern how their sterility may or may not relate to their suffering. Second, we must

respect the complexity of life. Having a child cannot be reduced to a simple biological

phenomenon but involves various other important elements, such as family relationships

and psychological aspects. Third, these new technologies should be understood as a means

to help the sterile couple have children (rather than preselect or enhance their children, for

example). The framework urges us to acknowledge the suffering of those with sterility;

concomitantly, it provides certain requirements to ethically regulate MAP.

In chapter 6, Zahedi-Anaraki and Larijani discuss ethical issues related to stem cell research

and its potential clinical applications. As stem cells have the capacity to differentiate into a

variety of cells which may be employed for therapeutic purposes, research has held much

hope and enthusiasm for their positive contribution to the treatment of currently incurable

illnesses. At the same time, such research, particularly that employing embryonic stem cells,

has been criticized as it involves ethical challenges, some of which are related to personhood

Bioethics in the 21st Century

and human dignity. The chapter begins with definitions and characteristics of several types

of stem cells. The ethical issues discussed in this chapter include human dignity in relation

to the instrumentalization and destruction of human embryos, safety concerns in clinical

applications of stem cell use, informed consent for conducting procedures involving stem

cells, slippery slope arguments regarding the creation and use of human embryos, resource

allocation and commercialization of stem cell therapies. In addition, the authors refer to

legislation and guidelines concerning stem cell research by national and international

regulatory bodies as well as positions expressed by religious authorities, such as in

Christianity, Judaism and Islam. The authors conclude by indicating the need for research

on alternatives to embryonic stem cells, such as induced pluripotent stem cells, for realistic

regulations in relation to stem cell research, for control of commercialism, and for more

engagement of the public.

In chapter 7, Nie argues against oversimplification and dichotomy regarding views of

cultural differences between China and Western countries. More specifically, he argues

against the popular view that Chinese medical practice traditionally endorses no or indirect

disclosure of personal health information to patients, unlike Western medical practice. He

argues that China had a tradition of direct disclosure to the patient, unlike some Western

traditions, and that the majority of Chinese people today wish to know the truth regarding

their medical condition. Nie suggests that this historical and sociological reality is ignored in

“the cultural differences argument”, which results in the widely accepted stereotype of

China as being very different from Western countries in this respect. According to Nie,

healthcare professionals in China are in fact making efforts to move toward honest and

direct disclosure of the patient’s condition. He argues that the shift of attitudes in favour of

full disclosure may not be a mere imitation of current Western practice but rather a return to

traditional Chinese medical practice. More generally, he rejects cultural stereotypes, and

endeavours to explore cross-cultural bioethics with more attention to the normative and

shared aspects of ethics and to the complexity and internal heterogeneity of each culture.

In chapter 8, Pyrrho illustrates ethical issues involved in nanotechnology, which may

include numerous technological possibilities that may impact on a wide range of industries.

What seems troublesome to begin with is the lack of consensus regarding the definition of

nanotechnology, other than that it deals with nanoscale particles. More importantly, it

concerns the chemical and physical properties originating from the size of these particles.

Without more conceptual clarity on nanotechnology, different players understand it

differently. Despite inevitable uncertainties, the authors believes that it is important to

analyze and discuss potential ethical issues involved in this promising technology before the

actual scientific advances take place. They discuss autogenous and heterogenous ethical

implications of nanotechnology. The former concerns the scientific consequences of

nanotechnology, whereas the latter concerns its bearing on cultural, social, economic,

environmental and political matters.

In chapter 9, King, Whitaker and Jones illustrate scientific advances that call for speculations

in relation to their potential technological applications. Such technology may involve serious

ethical issues. While some speculations may become real in the near future, others may be

highly unlikely, such as perfectly tailored prophylactic medication for an individual based

on his or her genetic data. Hence, the authors question whether it is worthwhile for

bioethicists to engage in speculative bioethics where the issues are based on mere

possibilities of consequences resulting from potential technologies. Speculative ethics may

be a provocative term. In this chapter, genomic medicine, nanotechnology, regenerative

Introduction to Bioethics in the 21st Century

medicine, and cryonics are discussed, with much space given to cryonics as an extreme

example involving speculation. Criticism toward ethicists’ engagement in speculative ethics

relates to epistemological problems and moral consequences of these problems, e.g. being

less attentive to current ethical concerns that should be addressed in the present. Still, some

critics support the positive role of speculative ethics in guiding the direction of science. The

authors oppose such a defense of speculative ethics, arguing that one cannot consider all

possibilities and that one cannot determine which possibilities are worth ethical

consideration. The authors conclude that bioethicists should be cautious about ethical

engagement with speculative matters, although it may not always be easy to discern

whether these are scientific facts or fiction.

3. Acknowledgements

Thanks are due to Ian Gallant and Luljeta Pallaveshi for their technical assistance in editing

this book.

4. References

Beauchamp TL, Childress JF. (2009). Principles of Biomedical Ethics, 6th ed. Oxford: Oxford

University Press. ISBN-10: 0195335708, USA.

Rudnick A. (2001). A meta-ethical critique of care ethics. Theoretical Medicine and Bioethics

Vol. 22, No.6, (September, 2001), pp. 505-517, ISSN 1386-7415, eISSN 1573-0980.

Rudnick A. (2002). The ground of dialogical bioethics. Health Care Analysis. Vol.10, No. 4, pp.

391-402, ISSN 1065 3058, eISSN 1573-3394 .

Rudnick A. (2007). Processes and pitfalls of dialogical bioethics. Health Care Analysis,Vol.15,

No.2, (June, 2007), pp. 123-135, ISSN 1065 3058, eISSN 1573-3394.

End of Life Treatment Decision Making

Juan Pablo Beca and Carmen Astete

Centro de Bioética, Facultad de Medicina,

Clínica Alemana-Universidad del Desarrollo,

Santiago

Chile

1. Introduction

Every human being has a personalized life and generates meaning which is subjective and

depends on cultural facts, beliefs, faith and biographical experiences. End of life could mean

a long period of a human life, but end of life decisions are near death decisions. Death is the

loss of biological life and it can be verified. Nevertheless it can be seen as a mystery and is

open to different points of views. What is unquestionable is that our human life is finite and

therefore it will always come to an end. Death is not only inevitable but a part of each

individual life or the last chapter of each personal biography. To be conscious about one’s

own life’s finitude is a unique quality of the human person as a historic and temporal entity.

To comprehend its intrinsic dignity and to find deep meaning to human life, it is important

to internalize and accept life’s finitude and the certainty of death. When this is achieved, it

may be easier to die in peace. Callahan says that end of life and death should be more

acceptable for those who have accomplished their personal life projects and moral

obligations (Callahan, 1995). It is still socially inappropriate to talk about end of life or death.

This also holds for physicians and other health care professionals.

Death and dying are not the same. Dying is commonly not a instant but rather variable,

complex and frequently lengthy. End of life may take place at any age and may occur

because of a variety of physical conditions, chronic or acute illness, degenerative diseases or

accidents. Many times dying occurs with much pain and suffering, with a personal

emotional and spiritual crisis, anxiety and moral distress. This generates various questions

and problems for those who are leaving life and for their loved ones. No matter what their

personal beliefs might be, everyone faces the mystery of life and death with doubts or

questions that have no definitive answers. This is a perennial issue that is not expected to

change with 21st century technology, hence this chapter will not focus on technological

aspects of the ethics of end of life.

Most patients at the end of life receive health care, but it is commonly provided without

clear objectives and with insufficient knowledge of their wishes and hopes. Care givers are

usually very able in their technical skills but confused about what is the best for each

particular patient. We are all aware of the many changes in medicine in the 20th century,

from earlier when nothing very effective in treating illness could be done, to our days when

we are able to cure many diseases and to prolong life for days, months or even many years,

although the disease has not been cured. This progress has led medicine to focus on curing

Bioethics in the 21st Century

and to neglect its historical mission of caring for those who suffer and for those who are in

their dying process with the exception of palliative medicine. Many authors have analyzed

this divergence of the efforts for curing and for caring. One of the more clear-cut studies was

the Hastings Center project to re-establish the goals of medicine (Hanson & Callahan, 1999),

where two of the four are: ….cure and care of those with a malady, and the care of those who

cannot be cured … and ……the pursuit of a peaceful death …… A high proportion of patients at

the end of their lives receive treatments that do not benefit them in terms of healing, relief of

suffering or personal wishes achievement, and their distress and agony are extended. It is

not clear why it has been so hard to improve health care at the end of life.

Situations that patients, families and care givers have to deal with when they care for

patients who are at the end of life are numerous and variable. Relevant issues are the need

for controlled pain, anxiety and other symptoms; how to know the patient’s wishes, fears

and hopes; which is the best way to respect his or her values and advance directives if they

exist; how to respond to emotional and spiritual needs; how can family and other loved ones

be supported; and how can care givers be helped in relation to their own distress. Each one

of these and related issues require specific answers and difficult decisions have to be made.

There are no easy, precise or general answers. The aim of this chapter is to analyze the

complexity of end of life decision making and to suggest some ways to improve it, so that it

can benefit patients and their relatives. Four representative situations will be described, to

be kept in mind while reading this chapter. Then different types of decisions and related

challenges will be discussed, as well as by whom and how they should be made (euthanasia

and medically assisted suicide will not be considered in this discussion). Suggestions on

how to improve end of life decisions will be made. The underlying assumption here is that

the topic is in part an ethical matter as end of life decisions commonly involve conflicts of

values, such as prolonging life vs. reducing suffering.

2. Four representative cases

The following situations that are presented raise questions about the end of life decisions

that had to be made and the problems that health professionals, patients and family

members had to face. Readers should keep these situations in mind while reading through

the rest of this chapter.

2.1 Situation 1

A 68-year-old patient who suffered from gastric cancer diagnosed eight months earlier

presented multiple peritoneal and hepatic metastases, despite several rounds of chemo and

radiotherapy. He was an independent professional, married with two sons, two daughters

and eight grand children, all of whom were very close. He understood his disease and

accepted his near death based on his strong religious faith. After his last admission to

hospital, he decided to be cared for at home and his general condition quickly deteriorated.

He was nearly emaciated, despite being on partial parenteral feeding. Four years earlier, due

to cardiac arrhythmia that was refractory to medication, the patient had a cardiac

pacemaker implanted, regulated to go on if his own frequencies fell below 70 beats per

minute. Given the patient's terminal status, some in the caring team expressed their doubts

about the pacemaker’s effects during his dying process. The patient had mentioned his

intention to donate his pacemaker after death, but had not asked for its deactivation. The

cardiologists were not sure about the effect of the pacemaker in a possible prolongation of

End of Life Treatment Decision Making

the patient’s final time. Nevertheless, they opposed deactivation, which they considered as

ethically uncertain. The family was initially in favour of the deactivation, but ultimately

decided against it because of the specialists’ uncertainty. The condition of the patient

progressively deteriorated into a state of stupor and later into a coma. This moribund phase

lasted for ten days, with a cardiac frequency invariably fixed at 70 beats a minute, which is

explained by the action of the pacemaker. Although physicians and family members

decided based on what they felt was the best on clinical and ethical grounds, the patient had

an artificially prolonged agony and the family suffered deeply during this period.

2.2 Situation 2

A 46 year old previously healthy industrial manager had a severe car accident while driving

alone on a highway. After emergency measures were carried out at least one hour later by

the rescue ambulance personnel, he was transferred in extremely poor conditions,

unconscious and with visible multiple fractures to a small community hospital. He was

intubated and after initial hemodynamic stabilization he was transferred by helicopter to a

tertiary care hospital. At admission he was unconscious, with very low blood pressure,

severe metabolic acidosis, and rapidly developed multisystemic failure needing mechanical

ventilation. His fractures were immobilized and two days later he was connected to dialysis.

His neurological assessment demonstrated deep coma, some occasional seizures, and the

serial CAT scans showed extensive demyelization lesions and cerebellum and basal ganglia

lesions, all of them secondary to a prolonged ischemic encephalopathy. After five days with

no change, the neurologists made clear that the patient’s recovery would not be possible and

that in case of survival he would go into vegetative state or another similar condition.

The patient’s wife, his two adolescent sons and his mother were informed about the almost

impossible chance of recovery and about the prognosis in case of survival. The possible

courses of action, including withdrawal of treatments, were discussed with them and with

the neurologist in an ethics consultation meeting. There was neither a living will nor other

expressions of the patient’s preferences in case of being near death with risk of severe

neurological damage. His wife said that she was convinced that if he could choose he would

decide to stop all treatments because he would not want to live with such severe

neurological damage. The critical care medical staff, although very uncertain about

withdrawing treatments, agreed to her demand. After some hours, and giving his family

some time to be with him privately and for the administration of sacraments by a catholic

priest, mechanical ventilation was discontinued.

2.3 Situation 3

A 60 years old woman was a widow with only one daughter who was married with a two

year old son. She had severe disseminated lupus that started many years before, with

progressively worsening recurrences. She also had poorly controlled celiac disease and was

undernourished. She lived alone and had to sell her small clothing industry as she was not

able to run it anymore. Her physical condition had deteriorated because of generalized

muscle and joint pain, weakness and extended skin lesions. She became a very isolated

person, in spite of having good medical care, well controlled medication, psychological

support and the necessary domestic assistance. She had a good but not very close

relationship with her daughter, and she had not established a good bond with her grandson.

She was admitted to hospital with severe lupus relapse, with pneumonia and in initial renal

failure with some signs of encephalopathy. After her dehydration and metabolic state were

Bioethics in the 21st Century

stabilized and the infection had been controlled she developed progressive renal failure

that required dialysis. She was informed that this was a necessary procedure now, which

was possibly indefinite in time, and that dialysis could be done as an ambulatory service

three times a week. She apparently understood the information but did not agree and

refused dialysis. The attending physicians were disappointed, regarded her decision as a

result of mental confusion and asked her daughter to decide. The daughter made clear

that her mother had for a long time considered her quality of life as very poor and was

not willing to accept more treatments, although she had never written a living will nor

formally assigned a proxy. She also said that the only other family member that could

know the patient’s preferences was her brother, but accepted that it was she who had to

represent her mother’s wishes. She said that she believed that one should fight to be alive

but that life cannot be forced by others as an obligation, and that she thought that her

mother shared this idea. She consulted with her uncle and the case was submitted to an

ethics consultation. Finally she decided to support her mother’s refusal of dialysis or any

other new treatments, allowing the progression of disease. She said that although it was

extremely difficult and sad for her, she had to respect her mother’s wishes even if she

didn’t entirely agree with them.

2.4 Situation 4

This was a 2 ½ year old female infant on mechanical ventilation since her first day of life

because of a generalized hypotonia with no muscle reflexes, no swallowing capacity and no

spontaneous breathing movements. She could only move her eyelids. She was conscious

and could establish eye contact when she was awake. She was fed by a nasogastric tube and

several weaning trials had failed.

She was the first baby of a young couple of low socioeconomic and educational level, but

they had enough understanding about their daughter’s unrecoverable condition. They had

established a close attachment and visited her every day in the Children’s Hospital ICU.

First muscle biopsies revealed a generalized muscle fiber atrophy which is suggestive of a

mitochondrial myopathy. The ethics committee was consulted about treatment limitation

and suggested repeating the muscle biopsy in order to have a complete genetic diagnosis as

an essential requirement. The committee recommended that only then could a treatment

withdrawal be decided with both parents, to allow the baby’s death under proper sedation

and to provide support for her family. The parents declined consent for further invasive

studies or treatments, arguing that they only wanted to avoid all suffering for their baby,

that they were not prepared to stop assisted ventilation, and that they ultimately expected a

miracle.

3. End of life decisions

Advances in medicine, medical technology, diagnostic procedures, antibiotic therapies, life

support treatments and other interventions in critical care medicine in the last few decades

have produced many new possible decisions and problems that physicians have to face

when they are dealing with terminally ill patients. For each possible intervention or

treatment and for each problem patients go through, there are concrete decisions to be

made. This is not only a problem in critical care medicine or in the treatment of acute or

terminally ill patients, but also when care givers deal with chronic or degenerative diseases

at any age, or when elderly people come close to their final stage in life.

End of Life Treatment Decision Making

In order to consider clinical decisions when a patient appears to be entering the final stages

of his or her life, clarity is required in relation to diagnosis and prognosis. After these have

been clarified, it becomes necessary to determine if the patient has no real possibility to

recover and therefore is in his or her final stage. Only then should end of life decisions be

made, focused on what can be regarded as the best for the patient or, in other words, trying

to find out what would be the patient’s best interest. This is a difficult question to answer as

there are many possible ways or courses of action that can be regarded as good and

legitimate ways to benefit these patients (recognizing the primacy of patient choice when

known).

For each patient who is facing possible death, the amount of care decisions may be

numerous, from nursing care and diagnostic procedures to the more complex

management or procedures in intensive care. Although a great majority of end of life care

decisions involves limiting intensive care or treatments in order to avoid prolonging

suffering, we will first note other decisions that should take place before that. The first is

the need for clear information provision to the patient or surrogate about his or her

condition, diagnosis, prognosis, chances of survival and possible handicaps or extended

rehabilitation time needed if he or she survives. This is a problem in itself as it has to be a

truth telling process but it also has to be compassionate and appropriate to the patient’s

emotional and cognitive capacities that are sometimes diminished. In bioethical terms,

information provision should balance the patient’s right to know and comprehend his or

her situation with the physician’s duty not to harm him or her by increasing stress or

anxiety through inadequate or unnecessary information. Some patients may prefer not to

be informed, which should be respected as their right. Occasionally, if the patients are

emotionally fragile or partially incapacitated, family members should be asked before

informing him or her, at least in some cultures. In other words, this requires kind and

proficient communication. Family members or relatives may also have to receive

information, but not necessarily the same as the patient. Biographic facts that are private

should be confidential but sometimes some family members need to know more details or

exact information in order to make their own decisions. Often patients are incompetent

because of their prior condition, or as part of the acute state of their disease or treatments,

including due to sedation. Sometimes, incapacitated patients will not have appointed

somebody as a proxy with a durable power of attorney. Therefore information frequently

has to be given to their families as surrogates, as in situation 3, or in relation to pediatric

patients, as in situation 4. A complex decision is to establish who can best substitute the

patient for his or her decision making. This means establishing who would best know and

respect the patient’s values and wishes. For this decision it is necessary to be acquainted

with the family, with its dynamics and the roles of each of its members, which is

commonly unknown when there is no family physician who has known the patient and

the family for long.

Before describing specific decisions, it is important to note general decisions that patients

and families face. In a terminal or near death situation, should the patient be admitted to a

hospital, nursing home, another kind of institution, or stay at home with appropriate care.

These are crucial decisions that involve social features, resources and family care and all of

them should be based on patient wishes. It is far easier if he or she decides, or when they are

incapable if they have formally expressed their wishes through advance directives. In many

social groups and cultures, the usual situation is that patients’ wishes are unclear or

unknown and that their relatives have to express what they think the patients would have

Bioethics in the 21st Century

chosen. At this stage, physicians are not part of this decision, but they do have the

responsibility of treatment planning e.g. if the decision is to care for the patient at home.

The particular decisions to be made at the end of life of patients are mainly related to what is

known as “treatment limitations”. The first and clearest of these limitations is the patient’s

refusal of treatment, which is frequent in cases of cancer with metastasis, organ transplant or

even kidney failure, when these conditions are experienced as an end of life situation.

Patients’ rejection of treatment should be considered as right and therefore should be fully

respected, based on the principle of Autonomy, unless their capacity is unclear or impaired.

The rationale of limiting treatments is to avoid what is known as “treatment obstinacy”,

which is the approach of doing everything possible to prolong life and avoid death,

regardless of its burdens, suffering and costs (Real Academia de Medicina de Cataluña,

2005). Treatment limitation is based on futility and proportionality judgments, which

conclude that more interventions will only prolong the dying phase, extending agony and

increasing suffering. In different ways, this was the main problem in all four cases presented

above. It means not starting any new treatment or procedures, or withdrawing some of

them. This cannot be decided in bloc, as each treatment, whether more or less complex, has

its own purpose and therefore should also require a particular decision. In these highly

sensitive conditions, minor interventions such as an intravenous line, a feeding tube or a

biochemical test acquire special meanings for patients and family members. Often,

physicians are not aware of these meanings and of the great anxiety that they can produce.

It is also important to note that these kinds of decisions are not to be taken as one single and

definitive decision, because this is a continuous and evolving process where the patient’s

condition, symptoms and needs may change every day and even within hours. During the

course of this stage, both patients and their families require physicians’ and other

professionals’ support and guidance.

The decisions of treatment limitation usually begin with a Do-Not-Resuscitate order, which

means not to do what is routinely established as emergency protocols in cases where the

heart stops beating. Another limitation decision, if the patient is already in hospital, is to

decide not to admit him or her to intensive care units. Other decisions are to not perform

surgical procedures, either major surgeries or minor ones such as gastrostomy or

tracheotomy, and not to start vasoactive drugs, antibiotics or other treatments. In these

cases, a consistent decision should be to also not perform more laboratory or imaging tests.

Other decisions, such as not starting hemo-dialysis or assisted ventilation, are usually more

difficult to make, both for professional caregivers and for family members. All these

decisions have been described as withholding treatments, but they also can be decisions to

stop or to withdraw these or other life support treatments. For many of those involved in

end of life decision making, it is more complicated and stressful to decide to withdraw

rather than to withhold treatment. Even if the intention of both are in the patient’s best

interest, and we know that there is no significant moral difference between them,

withholding and withdrawing treatment decisions are experienced as different. Perhaps the

most difficult (withdrawing treatment) decision is to stop mechanical ventilation, because

death may occur shortly after it is performed, and inevitably many will feel it is the cause of

death. This was the hard problem faced in situations 2 and 4. Discontinuing assisted

ventilation is associated with many fears and myths, such as that it is a sort of euthanasia, or

that it is illegal or risky for physicians who could be taken to court for it. In a similar way the

deactivation of cardiac pacemakers is a complex and difficult decision as occurred in

situation 1. Another special situation that has been widely discussed after the Terri Schiavo

End of Life Treatment Decision Making

and Eluana Englaro cases is the withdrawal of artificial nutrition and hydration (A.S.P.E.N.,

2010). These procedures are perceived as a mandatory duty of basic humane care by some or

as an unnecessary technical intervention by others.

The decisions described above do not mean abandonment of the patient or that “there is

nothing to do”. Decisions of treatment limitation can be part of actions that favor the

patient’s wellbeing, in order to make possible a peaceful death. Therefore, end of life

decisions include the planning of efficient symptom and pain control plan with all the

necessary medication and sedation.

Other kinds of decisions are related to the patient’s spiritual needs, as severe illness and the

state of being near death cause a personal spiritual crisis that is frequently unrecognized.

Spirituality is understood as the compilation of hopes, fears, faith and values that guide

one’s plans and meaning of life and death. It involves the spiritual or existential suffering

that includes hopelessness, feeling like a burden to others, loss of sense of dignity and loss

of will to live. It includes but is not restricted to the patient’s religious needs (Chochinov &

Cann, 2005; Sulmasy, 2006). The patient’s spiritual needs have to be defined by him or

herself. But physicians and other health care professionals have the responsibility to make

sure that these needs are recognized and evaluated, and that patients are offered the

appropriate responses to them. To include spiritual and emotional support as a substantial

part of end of life medicine centered on the care of the patient and his or her family will

considerably facilitate the patient’s peaceful death.

When addressing the topic of end of life decision making, it is necessary to consider that

these decisions sometimes have to be made when it is not possible to know the patients’

values and wishes. This will always occur in neonates with untreatable conditions, but also

in children when their parents have to make decisions on their behalf, as in situation 4. In

incapacitated adults because of advanced Alzheimer or other neuropsychiatric diseases,

decisions will also have to be made by proxies, but patients’ previous values should be

respected. Some patients and their families need professional assistance in communication

in order that they can better understand their disease and prognosis, and then express their

doubts and preferences. This is what is referred to as a guided and assisted interpretive

patient physician relation model (Emanuel & Emanuel, 1992).

Decisions for end of life care are influenced by multiple factors related to patients, their

families and social environment, cultures, religion, available resources, health policies and

more. Decisions may change according to each patient’s age, capacity, emotional condition

and understanding of diagnosis and prognosis. Decisions may also change if it is a chronic

or acute disease and in cases of added complications to previous conditions, even more so if

they occur after prolonged admissions to hospitals. Also, decisions are dependent on family

fears, hopes, guilt or interests. One should also consider differences between family

members’ points of views. Decisions related to similar situations may differ in different

cultures, for example in Anglo-Saxon, Latin-American, European or Asian environments,

where notions about meanings of human life and about death and dying can differ. Cultures

influence decisions of patients, families and health professionals. Their religious thinking

can determine what they want for themselves or for their loved ones when they are

approaching their final stage in life. Whether they believe in eternal life or not, in re-

incarnation or in some form of transcendence based on their faith, has crucial influence over

their decisions. Decisions also largely depend on the economic situation of patients and

families, especially if they have to pay for final care by themselves without state or

insurance coverage. Health policies may greatly determine the kind and amount of care

Bioethics in the 21st Century

people will receive at the end of their life, according to hospital guidelines and available

resources. Last, but not least, decisions of quantity and kind of care depend to a great extent

on physicians and other professionals’ recommendations, which are also influenced by their

own cultures, values, experiences and personal sensibilities.

Another crucial issue for end of life decision making is to establish if the care and treatments

given to the patient are effective or futile, and if they are proportionate or not. These

determinations, sometimes defined as the likelihood of benefit cannot be established as

exact determinations. Technical and medical assessment for futility can be based on medical

evidence and experience, but proportionality of burdens or costs are non-medical appraisals

that should also be considered.

Before describing problems of end of life decisions, it is necessary to define what we

understand by euthanasia. Although it is not a focus of this chapter, it is part of an ongoing

debate. Different countries and cultures have dissimilar notions, social meanings and

legislations about this matter. What many people understand by euthanasia and what some

European legislations have approved, refers to well defined procedures to induce death in

specific circumstances of terminal patients. The terminology frequently used, of direct or

indirect, voluntary or non voluntary, and active or passive euthanasia, causes confusion.

Therefore, it is appropriate here to clarify that (medical) euthanasia should only be

understood as procedures that intentionally and voluntarily produce the patient’s death,

because of an incurable disease and unbearable suffering. It is therefore direct and voluntary

(Institut Borja de Bioética, 2005). This is different from accepting death as a foreseeable but

inevitable consequence of limiting futile or disproportionate treatments in order to avoid

suffering and therapeutic obstinacy. The ethical grounding of this is the moral difference

between producing and allowing death, and the well known doctrine of double effect.

Therefore, treatment limitation should not be confused with euthanasia.

4. End of life decision-making problems

Decisions related to patients who are in terminal conditions because of acute or chronic

diseases, as well as to those who are ending their lives with different degenerative

conditions, can be difficult and problematic. These problems concern in different degrees

patients, their surrogates, physicians and other health professionals. A list of these issues is

shown in Table 1. Decisions are focused on patients and their families’ views about the

meaning of life, the dying process and death itself. In some way, at least in the western

world, we live as if we are immortal, not recognizing our finitude. Difficult as it is to admit

to any serious disease, it is more difficult if its chances for recovery are rather low. In such

a situation many patients go into a personal existential crisis, questioning their life

achievements, developing complex fears and hopes. Some of them expect to have time

enough to express their wishes, to achieve some reconciliation with family members, to

express their gratitude to their loved ones and to pray according to their religion. Other

patients, with the same diagnosis and clinical situation, prefer not to know about their

condition, and therefore disregard information and deny the illness or its gravity. Some

want to extend their lives as much as possible, while others wish to have a short disease,

because they accept their death more readily or because they fear the disease and its

treatments. A personal approach is required. Imagine a 68 year old male with lung cancer

and initial metastasis. His younger daughter is planning her wedding to take place in two

months. He will most likely struggle to be alive at least for his daughter’s wedding, and

End of Life Treatment Decision Making

then to be able to see her with her new family, hopefully giving birth to her own children.

In this situation the patient, his daughter and the whole family will have the same

aspirations. In contrast, with the same diagnosis in another patient of the same age, but a

widower, retired and living alone, the patient may refuse treatment and expect the course

of his disease to be as short and painless as possible. A different situation is that of the

parents of a 5 year old son with deep brain damage because of birth asphyxia, who now

has a severe pneumonia on mechanical ventilation, with added multiresistant sepsis.

Some parents would accept that death, sad as it is, may be best for their child, while

others may request disproportionate therapies. Other problematic decisions are organ

transplant or abortion decisions, which are influenced or determined by cultures and

religions (The Lancet, 2011).

1. Patients’ and families’ views of death

2. Health professionals’ views of death

3. Human life regarded as an absolute value

4. The right to refuse treatment

5. Patients’ capacity

6. Surrogate’s decision capacities

7. The meaning of the duty to care

8. Quality of life

9. Fears of limiting treatments

10. Specific situations

Table 1. Main issues in end of life decisions

Physicians and other healthcare professionals such as nurses, physiotherapists, and

psychologists have views that influence information and guidance for patient or proxy’s

decisions. Perhaps our own biases are inevitable as we inform patients not only through

verbalization but also through our non verbal communication. And these biases in some

way determine the emphasis on prognosis, severity of the expected symptoms for the near

future, quality of life if the patient survives, and available courses of action (Gilligan and

Raffin, 1996). Examples are the issues presented in situations 3 and 4. It is difficult not to be

directive when informing patients and their relatives. It is important to recognize that health

care professionals are members of the same societies as their patients, although they do not

necessarily share the same culture, religion or beliefs. Therefore they may have similar

uncertainties and doubts. But it is even more challenging for health professionals, as they

may experience the death of their patients as a failure, both personally and of their

professions. This is why physicians often feel that even if they cannot cure a patient they

have the duty to prolong his or her life as much as possible. As part of the denial of their

patient’s impending death and because of the difficulties they have addressing family

members, intensive care residents try hard to keep patients alive, at least until the next shift.

Many times physicians are not prepared to limit treatments, arguing that their role is to

prevent death and that they should not play God, by shortening life (although arguably they

do so by prolonging life).

Bioethics in the 21st Century

Physicians and relatives often excessively prolong the agony of patients. Many end of life

treatments unduly prolong suffering. This is therapy obstinacy which is not a benefit but a

harm for the patient. A frequent reason to do so is viewing human life as an absolute value.

The notion of the absolute does not allow any grades and therefore life should be considered

a fundamental and not an absolute value. Still, if or when prolonged agony is worse than

death, our moral duty is to avoid suffering rather than to postpone death.

If the above issues are clearly understood, one can recognize and respect patients’ right to

refuse treatment, which is contrary to the paternalistic tradition of health care. Patients’

rights are based on autonomy, which is easier to understand in relation to elective

treatments or to informed consent to research. It is more challenging when terminal patients,

whose lives can be prolonged, refuse ordinary treatments. This may be because the patient

does not want to live anymore in what he or she views as extremely poor conditions, as in

situation 3. But it also may be the consequence of fears or of not having full understanding

of prognosis and of the treatment, as occurred with the parents’ decisions in situation 4.

There may be no problem if the refusal is for non-crucial procedures, but serious conflicts

might arise when it is for treatments that are considered medically necessary. Imagine

patients refusing feeding tubes, drainage or oxygen masks that are simple procedures that

mitigate symptoms and do not involve much risk. The conflict may be more challenging if

family members agree with these kinds of refusals, but may worsen when family members

refuse treatment for patients who have not even been asked about it. In some cultural

environments, such as in Latin America, this occurs often because families feel that asking

patients about treatment options can be a great emotional burden (to patients) that should

be avoided.

Patient decisions about their treatment rely on their right to decide. This right depends on

each person’s capacity. At times the assessment of capacity will not result in a yes or no

answer. If the patient was incapacitated long before the end of life situation, there will be

no problem and all his or her decisions have to be made by their proxy. A common

situation is that of partially capable patients who now may be less able to understand

their diagnosis and prognosis. Other cases may involve previously healthy and normal

adults who now have a critical disease with uncertain or very poor chances of full

recovery. In these circumstances, although they were previously able to express their

desires, they may now not be able to do so. The problem is how to establish whether the

patient is permanently or even temporarily incapacitated (Drane, 1985). Capacity implies

not only cognitive but also emotional qualities and patients in a critical condition may

have some degree of emotional difficulty to make decisions about their end of life

treatments (Gilligan & Raffin, 1996). It is necessary to evaluate capacity for each decision

in itself. Sometimes patient or family requests appear to be unreasonable or may even be

against the law. This would be the case if they demand to abruptly stop all treatments,

transfer a patient when it is not possible because of his needed life support requirements,

limit treatments when recovery is still likely, ask for the administration of lethal drugs,

and other extreme demands. Asking for disproportionate treatments can also be

considered as an unreasonable demand. Sometimes asking for more treatment, when

there is no chance of recovery and death is likely to occur within the next few hours or

days can be considered unreasonable, although it may be understandable. Examples of

these situations are demanding ECMO in cases of advanced lung fibrosis, mechanical

ventilation in advanced Lou Gehring’s disease, or more chemotherapy in final stages of

End of Life Treatment Decision Making

cancer. In all these cases, the conflict between families and physicians may become severe.

This should not be seen as disrespect of autonomy but as the limitation of autonomy,

because of the patient’s partial incapacity or because of unreasonable requirements that

would compromise medical integrity.

Assessment of patient’s capacity for end of life decision making is not sufficient. Decisions

may rely, at least partially, on surrogate decision makers. In some cultures, a proxy can be

formally nominated or designated, but in others many family members may honestly think

that they have the right to make decisions for capable patients. Stress and anxiety of those

who have to decide in the name of their loved ones is strong and unavoidable, which makes

it easier for them to avoid treatment limitation choices. Decisions or requirements coming

from a spouse, son or daughter who are in severe emotional distress are questionable.

Surrogates’ cognitive and emotional capacities should be assessed. Decision making may

conflict with a family’s values, sensibilities and interactions. Examples of these situations are

common, especially when one fairly dominant member of a family, sometimes with

personal emotional problems or guilt, strongly demands unreasonable treatment or

procedures. This can be very common in large families, in cultures where an extended

family feels that they can also participate in decision discussions, and in very dysfunctional

families. In such cases psychiatric evaluation and support can be helpful.

Other issues concern physicians and other health professionals or caregivers. They all share

the moral duty to care. Some of them believe that their responsibility is to always provide all

possible treatment to every patient. But the real duty to care is the commitment for the

patient’s good or best interest, and there are situations where the best for the patient is not

to prolong his or her life. Situation 1 and 4 are examples of this. The aim should be not a

longer life but a better life. These situations are complex and include many emotions and

sometimes severe disagreements among professionals and between them and family

members.

The previous paragraph relates to quality of life. Quality of life is a subjective judgment.

When somebody says I don’t want to live any more, he or she may be saying I don’t want

to continue living in this condition or with these symptoms. Many people would initially

say they would not accept chemotherapy or live with paraplegia or even with a

colostomy, but most patients in these conditions want to continue to live. These and other

limitations will certainly decrease their quality of life but they cannot be the only reason

to withhold or to withdraw treatments. Nevertheless, there are conditions which common

and reasonable people would never like to experience. Examples are a permanent

vegetative state, advanced Alzheimer disease, severe neurological damage without self

consciousness, and patients in unbearable pain with no response to analgesia. Quality of

life, even if it is subjective, should be one of the considerations for treatment decisions at

the end of life.

Different kinds of patients may require different responses for similar situations. This is so

with age differences as decisions on newborns, infants, children or elderly people may

differ. Decisions when faced with scarcity of resources, also differ. Imagine deciding to

refuse a potentially life saving new surgery, to stop vasoactive drugs or dialysis, to

deactivate a cardiac pacemaker (Goldstein et al., 2004 & Mueller et al., 2003) or to withdraw

mechanical ventilation (Campbell, 2007). One of the most challenging decisions is the

withdrawal of hydration or nutrition in vegetative states. Specific end of life decisions are

listed in Table 2.

Bioethics in the 21st Century

Treatment limitation decisions

 Do Not Resuscitate Orders

 No more diagnostic procedures

 No more lab tests

 Withholding new treatments

 Withdrawal of hemodialysis

 Discontinuing antibiotics

 Discontinuing vasoactive drugs

 Discontinuing mechanical ventilation

 Withdrawal of artificial nutrition

Patient and family support decisions

 Analgesia and sedation

 Comfort procedures

 Companionship

 Favoring a private room or space

 Emotional support

 Spiritual support

 Family bereavement support

Table 2. End of life treatment limitations and support decisions

5. Who should make end of life decisions?

Up to the second half of the twentieth century, the question who should make end of life

decisions had a simple and clear answer. Physicians had to decide, as they were supposed to

know what was best for their patient. This paradigm has changed, rejecting paternalism, as

patient autonomy has been endorsed. Also, decisions that were few and relatively

straightforward are now numerous and increasingly complex because of the rapidly

growing number of medical procedures. Nowadays it is not the attending physician who

has the power and responsibility for making decisions. Decision making is now sometimes

in many hands, each one with their own capacities and limitations (Karnik, 2002). The more

agents take part in decision-making, the more chances of conflict which in these highly

sensitive situations is difficult and distressing. A list of agents involved in end of life

decision making is shown in Table 3.

The default decision maker is the patient, based on his or her right to accept or refuse

treatments. This has been socially recognized and established in most contemporary

health legislation as part of human rights. The bioethical basis for this is the principle of

autonomy, which in health care means that everybody has a presumed right to decide

what can be done to him or her, and that nothing should be done to him or her without a

formal consent. However, the faculty to act with autonomy depends on capacity, on the

full comprehension of the clinical condition, of prognosis and of the possible medical

choices. Some patients are not autonomous since they lack minimum capacity, as occurs

with infants, younger children, patients who are severely brain damaged, have dementia

or are unconscious, and with those who are fully sedated. However, sometimes it may be

difficult to determine the patient’s capacity. Elderly patients are sometimes treated as

End of Life Treatment Decision Making

incompetent even if they are at least partially capable. Cognitive and emotional capacities

are required, as well as freedom, which means the absence of any sort of domination or

coercion which also may include some forms of intended compassionate guidance.

Patients facing critical disease or terminal diseases are living a personal crisis, and many

times feel alone, anxious or frightened. Therefore, their complete freedom to decide

autonomously may be questionable. But that doesn’t mean that they are not able to make

decisions for their treatments and medical care. When they cannot express their

preferences competently, other means have to be found in order to fully respect patient

values and preferences in end of life care.

 Patients

 Surrogates

 Family members

 Attending and other physicians

 Other healthcare professionals

 Institutional ethics committees

 Ethics consultants

 Institutional authorities

 Judges

Table 3. End of life decision making agents

If the patient is not competent and therefore cannot make his or her own decisions, the best

way to proceed is to find out if he or she has previously expressed his or her wish. Although

it has been widely promoted in the U.S. and in many other countries, only a minority of

people have written living wills where they make known their wishes regarding life

prolonging medical treatments, and state the kind of care they would accept or refuse if not

able to decide for themselves. These advance directives (living wills) should be known to

family members and to caring physicians, but this does not always happen. These

documents, although helpful, are not definitive, as they are not very specific and at times

only state that the patient would not like to receive extraordinary life support measures or

unduly prolonging treatments. Another limitation is that these living wills are established

when the patient is not ill and thus is not facing the situation of approaching death. The text

may have been written years before and patients could have changed their views or

preferences since then. Therefore, living wills should be followed with judgment, as a guide

to respect patient values and hence autonomy.

Sometimes patients might have appointed a proxy using a durable power of attorney. Such

surrogates have the responsibility to assure that the patient receives end of life care

according to his or her preferences. In these cases it is the proxy’s responsibility to fully

respect the patient’s values, and to reject interventions he or she feels the patient would not

Bioethics in the 21st Century

have authorized if the patient were capable to decide. A surrogate needs to be objective and

unbiased, which is not easy as they are usually close friends or relatives who are

emotionally involved. The capacity of the surrogate has to be evaluated. When there are

discrepancies between medical recommendations and the proxy’s choices, problems may

emerge which have to be resolved through dialogue.

If the patient is not capable and has not appointed a proxy, then in some jurisdictions it is

the family’s role to represent him or her in decision making. A difficulty is that many

families are large and diverse, so then it becomes necessary to decide who within the family

will act as the patient’s surrogate. If the patient is married, his or her spouse may substitute

unless there is some clear impediment to that. For minor, parents may do so, although there

are special problems when parents disagree in their choices or when their wishes are not

clearly in the child’s best interest (McNab & Beca, 2010). Another problematic situation is

that of elderly patients with an absent or incapacitated spouse, and several sons and

daughters who may differ in their opinions. In these cases, difficult as it may be to

accomplish, it is best to appoint one of them as their spokesperson, making sure that all of

them are involved in the decisions that are made. In all these situations, the decisional

capacity of those who take part in decision making should be evaluated. Unreasonable

requests that are not in the patient’s best interest, or that do not respect the patient’s

preferences, do not have to be followed automatically and sometimes should be discussed

and appealed if needed.

The capable patient is the main agent for end of life decisions. A formal proxy or family

members are substitutes for incapable patients. This does not mean that patients or proxies

are the only decision makers. Historically, physicians were the main decision makers in

medical care, which has radically changed in the last decades, but they continue to have an

important role in deciding which treatments or procedures will be made available to

patients. Physicians have not only the responsibility of providing complete and clear

information but also a duty of guidance. Patients or surrogates may not have the capacity to

decide by themselves based only on clinical information. They need guidance which means

that attending physicians, the different involved specialists and residents, have to suggest

the best courses of action. Their guidance has to be non directive and as unbiased as

possible; therefore, physicians should acquire and develop these communication and

guidance skills (Yeolekar et al., 2008).

There is a wide network of physicians, residents and specialists, which includes intensive

care specialists, neurologists, cardiologists, surgeons and infectious disease specialists,

among others. This is similar with other healthcare professionals. Nurses are specialized and

teams include physiotherapists, psychologists, audiologists, clinical pharmacists, different

technicians, social workers and others. Each professional has a distinct appreciation of the

patient’s problems and what can be done to help him or her in the best way. Not

infrequently, patients and relatives establish good communication with the professionals

and trust their suggestions. It is common that non medical health professionals and other

care providers know more than physicians about the patient’s life, hopes, fears and wishes,

as well as about relevant issues. These professionals often play a significant role in the

decision making process in end of life patients, and this role needs to be acknowledged,

encouraged and supported by physicians.

Therefore, the decision making process involves the interaction of several agents rather

than a single decision by only one decision maker. This is a crucial notion that will be

End of Life Treatment Decision Making

developed further in this chapter. Depending on the complexities of each situation, more

decision agents may contribute to better decisions. When there is a great deal of

uncertainty or doubts, and when there are discrepancies between professionals’

suggestions and patients’ or proxys’ wishes, institutional or clinical ethics committees and

clinical ethics consultation can be helpful. Ethics committees are multidisciplinary groups

whose objectives are to propose guidelines in their institutions, to offer continued

education in bioethics for staff, and to analyze complex situations ethically. Situations are

presented to committees by physicians, other professionals, patients or families. The

analyses are conducted using deliberation, and suggestions are made. The method that

each committee uses may be different, but it is important that the method is specified.

One of the common methods is principlism, based on how a decision respects and

harmonizes the four principles of biomedical ethics: Autonomy, Non Maleficence,

Beneficence, and Justice (Beauchamp & Childress, 2001). Another widely used method is

casuistic analysis, which emphasizes the weight of clinical facts, quality of life, patient

preferences and contextual features (Jonsen et al., 1998). In Spanish and Latin-American

committees, a commonly used method is deliberation, as explained by Diego Gracia. It

starts with defining an ethical referential frame and continues with the analysis of

the clinical situations, the added social or contextual facts, the possible courses of action,

and it ends with suggestions and their ethical reasons (Gracia, 2007). No matter which

method a committee uses, their analysis should be multidisciplinary, including partners

such as diverse health professionals, philosophers, chaplains, social workers, lawyers and

more.

Clinical situations with ethical problems occur often in many hospitals, but only a few are

presented to an ethics committee. The reasons for this may be that it is time consuming, it

may be delayed, and physicians may fear being ethically judged. As a consequence, many

informal inquiries are submitted to committee members, who then cannot use a proper

method of analysis. As an alternative, individual ethics consultations are used, particularly

in the US. Formal ethics consultations are less frequent in Europe and have only been

recently reported in Latin-America. Ethics consultations are complementary to the

committees and should not replace this institutional ethical deliberation entity. They

constitute bed-side clinical bioethics with the purpose of helping to identify and analyze

ethical problems of single situations. Ethics consultations, either realized by a single

consultant or by two or three members of an ethics committee, assist in decision making in

situations with ethical uncertainties, and they can also diminish the moral distress of all

involved. Ethics consultation can be conducted by a single consultant or by a team on call.

Consultants can analyze each situation with the involved professionals and care givers, with

patient families and with patients as much as possible. This has the disadvantage of the

absence of multidisciplinary deliberation. Other limitations are that consultations are

extremely dependant on each consultant’s communication skill, the consultant’s biases

compassion and tolerance. Therefore, ethics consultants’ competencies have been

established, in addition to the requirement to be able to comprehend clinical features

(Aluisio, 2000). Clinical ethics consultants sometimes become mediators when there are

discrepancies between staff, patients’, and families’ points of view.

Not only patients, surrogates, physicians and other health care providers, institutional

ethics committees and ethics consultants have a role in decision making at the end of life.

Sometimes hospitals or healthcare institutions have their own guidelines that have to be

Bioethics in the 21st Century

followed. Health insurance companies may have specific policies that constrain patient

care, in relation to assessments, treatment and more. In some countries, some decisions

are established by each legislation and in some cases the final decision may be made by

judges.

End of life decisions are practical decisions that involve moral judgments. Such applied

ethics is uncertain. Some degree of uncertainty is part of many clinical decisions. This may

be why clinical and ethical decisions about care are difficult and stressful. So who should

make end of life decisions? There should not be a single decision maker. All parties that

have been mentioned have a role in the decision making process. Some of them, such as

ethics committees or clinical ethics consultants, are expected to use a specific method to

analyze situations and to offer suggestions. Decisions are a matter of shared decision

making based on an open and tolerant dialogue between all the mentioned parties.

6. How can End of Life decision making be improved?

The question is whether decision making can be improved and if so how. First, decisions

should always be focused on what is best for the patient. This means treatment of pain,

anxiety and other symptoms, together with fulfilling the patient’s needs and wishes as much

as possible. End of life decisions should actively pursue a peaceful death. To improve these

decisions, it is important to recognize that there cannot be only one method, guideline or

decision algorithm, but some suggestions will be offered here.

The focus should always be the patient’s “good”. This is not a scientific or technical issue.

Medical facts are necessary but not sufficient for this. In order to know what is best for each

patient, his or her whole biography, values, fears, hopes and preferences have to be

considered. Knowledge of social, family, economic and other contextual features is also

important. Involvement in decision making of all those who know, love and care about the

patient is needed. The aim of end of life care should thus focus on effective palliative care.

Decisions should focus on better physical, emotional and spiritual care, and by no means

any sort of patient abandonment.

In a strict sense the patient’s best interest should be determined by him or herself. This is not

possible if the patient is entirely or partially unconscious, which is common when they are

in their terminal stage. Therefore the aim is to respect as much as possible what he or she

expressed when they were able to do so. When patient have written living wills or have

formally appointed a proxy, there is far more knowledge of their preferences, even if the

exact conditions or symptoms were not known or anticipated when they expressed their

wishes. The basis of this is respect for Autonomy. Hence, a suggestion to improve end of life

decisions is to promote that people write their preferences in their own way or using living

wills. But, valuable as it may be to have more written living wills, it is even more important

that all adults talk about death and dying within their families and, if possible, clarify the

care they would like to receive if they have an incurable terminal condition and are not able

to decide for themselves.

Another way to improve end of life decision making is to increase ongoing efforts to

improve clinicians’ communication skills. Their training at undergraduate and postgraduate

levels as well as in continuous education programs should develop these competencies that

are the basis for getting to know the treatments patients wish for their end of life care.

Health care professionals should also be trained to provide emotional support to patients

and families. Physicians should also develop their own understanding of the meaning of

End of Life Treatment Decision Making

death, respect the different views that patients and families may have, and acquire the

necessary proficiency for symptomatic rather than curative treatment.

It has been suggested that surrogates could be supplied with empirical information on what

patients in similar circumstances tend to prefer, allowing them to make empirically

grounded predictions about what the patients they are involved with would want (Rid &

Wandler, 2010). Relevant anecdotal reports could also be very useful for surrogates. When

families take part in decisions on behalf of their loved ones, they will likely have doubts and

experience stress. Therefore another suggestion for improvement of the quality of decision

making is to support and guide surrogates.

A particularly helpful way of improving family participation in decision making is to

provide personal counseling for those who are more involved and to conduct special

meetings with the patient’s family, other significant others and caregivers. Counseling and

family meetings may be conducted by attending physicians or other staff and are typically

led by social workers, at least in North America.

Not all end of life situations involve ethics committees or ethics consultants, but the most

challenging ones may have a better outcomes if they are consulted. Therefore, a suggestion

to improve these decisions in places where there are no clinical ethics committees or

consultants is to train in bioethics a group of professionals in order to establish such

consultations.

A special and particularly difficult situation occurs when patients who are in nursing homes

have a life threatening illness. Whenever possible they should be supported to communicate

how they would like to be treated. The majority of people in this situation, particularly in

some countries, do not have written advance directives nor have they expressed their

treatment preferences. Furthermore, their relatives or proxies may not be available when

decisions have to be made. It is not the nursing home staff or caregivers’ responsibility to

decide what may be adequate and proportionate treatment in each situation. In such

situations, it may be helpful to delineate in advance what physicians and non-physician

health professionals together with the patient’s family regard as the best compassionate care

for each patient. If the person is partially capable, his or her capacity should be enhanced if

possible, to better know what his or her preferences are. Such pre-determination addresses

admission to a hospital or critical care unit, treatment of new diseases or complications,

chemotherapy or surgery, artificial nutrition procedures, other support and more.

Interesting tools for this purpose are the Physician Orders for Life Sustaining Treatments

(POLST) forms that are offered to improve the quality of care that people receive at the end

of their lives. POLST are based on effective communication between health professionals,

patients in nursing homes and their families. These forms are available in different

languages (Oregon POLST program).

Another suggestion to improve end of life decisions is to advocate that they be made in a

timely manner, as they are often made after prolonged and avoidable suffering. In order to

have these decisions made on time, the possibility of having to make them should be

anticipated, preferably at the time of patients’ hospital admission or soon after their

diagnosis and prognosis have been established.

It is important to remember that end of life decisions are complex and that decision makers

will have to take part in lengthy and/or complex processes. It is important to note that

everybody involved has specific roles in these processes. Physicians have to determine the

diagnosis and the possible courses of action, other health professionals share a role in

support and guidance, the patient will have to consent to or refuse treatments, family

Bioethics in the 21st Century

members or surrogates input the patient’s values and preferences (when known), and ethics

committees or consultants have expert advising and mediating functions. These are not

isolated and independent roles, as it has to be a shared decision making process. End of life

decisions will only be (clinically and ethically) good decisions if they are truly shared

decisions that respect all points of view in order to fully address patients’ best interests

(assuming that is primarily determined by patients’ capable choices, if known).

7. Conclusion

Advances in medical knowledge, technology, diagnostic procedures and treatment

alternatives in the last few decades have produced new clinical and ethics problems, many

of them related to end of life decision making. The different decisions to be made at end of

life should be based on the patient’s best interests, preferences, values and expressions of his

or her wishes. With a benefit-burden analysis, the aim ought to be the best treatment for

pain, anxiety or other symptoms, and the pursuit of a peaceful death rather than the

prolongation of life if that is accompanied by agony (most religions accept reduction of such

suffering).

End of life decisions are mainly related but not restricted to withholding or withdrawing

specific treatments. The aim is to avoid therapeutic obstinacy and patient abandonment, and

to include in end of life care emotional and spiritual support for patients and their families.

The process of decision making is associated with different views about the meaning of

human life and death, and with patients’ and surrogates’ rights. Relevant problems are

related to the evaluation of decision capacities, differences between caregivers and patients

or families, and diverse moral or legal concerns.

Decisions should be made by various agents, including the patient, and proxies or family

members as needed. Physicians and the other health care professionals have relevant

responsibilities, and ethics committees or ethics consultation have facilitation and

mediation roles. The key is that it has to be a shared decision making process with respect

for all points of view, addressing what is best for the patient and leaving out other

interests (note that justice such as in relation to resource allocation was not discussed

here).

In order to improve end of life decisions we suggest: encourage people to write their living

wills; support and guide surrogates; and promote timely decision making. In health

professional education, clinicians should be trained to acquire adequate communication

skills, emotional and moral strength, and at least basic knowledge of bioethics.

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Ethics Related to Mental Illnesses

and Addictions

Barbara J. Russell

Centre for Addiction and Mental Health

and University of Toronto’s Joint Centre for Bioethics

Canada

1. Introduction

1.1 Overview

The general public learns about mental illnesses and addictions primarily from mainstream

media, including news reports, television programs, and movies. The stories presented

usually centre on sensationalism or danger such as those about young women at life-

threatening stages of anorexia nervosa or people labelled as “psychopaths.” Or the stories

appeal to our feelings of sympathy or empathy such as those about people with untreated

mental illnesses sleeping on subway vents during winter or a person with moderate

dementia who finds greater companionship with someone other than their spouse. These

reports and programs often oversimplify the ethical nature of these situations by

dramatically pitting one value against another: self-determination versus life, public safety

versus rehabilitation, quality of life versus non-abandonment, and happiness versus loyalty.

Distilling situations down to one or two values can be motivated more by the ongoing

competition for the public’s attention and/or economics than by the demands of concise

reporting.

However, mental illnesses and addictions are complex, as those who live with a mental

health or addiction problem and their families can attest. The high incidence of mental

health and addiction problems and their disruptive and lasting impact on people’s lives,

families’ sustainability, communities’ well-being, and employers’ productivity are publicly

acknowledged more often now. In recent years, more and more governments (civic,

provincial/state, national) and employers have become interested in listening to those with

first-hand experience of these conditions and to those who have developed holistic,

integrative ways to diagnose and offer treatments and supports earlier and longer.

Ethical complexity is not limited to crises and strong emotions. It exists in everyday,

seemingly routine questions, experiences, and situations. The cases in section 1.2, below,

help illustrate the wide diversity of ethically complex, “real world” situations that those

living with a mental health or addiction problem, their families and friends, professional

healthcare workers and their managers commonly face. Accordingly, the selected cases

involve a variety of participants, interests, contexts, histories, health problems, options, and

values. The healthcare ethics literature---which is quite extensive now---and educational

workshops and courses encourage their readers and participants to increase their

understanding of a particular situation or question and they offer various theories, concepts,

Bioethics in the 21st Century

and approaches to help make ethically defensible decisions. This chapter has similar

objectives: first, to broaden and deepen readers’ understanding of ethically relevant aspects

in living with a mental health or addiction concern; second to increase the understanding of

ethically relevant aspects in offering, managing, and accessing healthcare services; and

third, to increase readers’ abilities to determine which options or responses to a particular

issue or situation are and are not ethically sound.

With this said, though, it is not just “soundness” or basic justification that will be

emphasized here. Too often decisions can be merely adequate ethically or minimally ethical.

The appropriate goal is strongly ethical decisions and responses. Whether treating spina

bifida, colitis or alcohol dependence, clinicians and healthcare organizations do not talk

about providing merely adequate or merely acceptable therapies. In terms of the “technical”

aspects of the programs and treatments they offer, their language is peppered with

adjectives such as high quality, incomparable, excellent, leading, the best, and world-class.

Why then settle for ethically “okay” or ethically adequate analyses and conclusions about

these same interventions? A healthcare treatment or service cannot be described as first-rate

or promulgated as “the standard of care” if its related ethical features have been simplified

or minimized. The level of attention to and engagement with an intervention or service’s

ethical features directly and proportionately impacts its quality.

Two other considerations contribute to ethically strong health care practices and services.

Health and healthcare are not about decisions and choices only. They are also and

inescapably about human interactions, whether it is the person’s interactions with her

family, teachers, or employer, or her interactions with her healthcare team, or the

interactions among her interprofessional and interagency workers. In his book, Ethics and the

Clinical Encounter (2004) and as a philosopher who spends a lot of time in hospitals, Richard

Zaner insightfully explores and questions the formal-informal and multivalent-ambiguous

interactions that occur routinely between patients and professionals. “How” we are with

one another matters a great deal ethically. Arthur Frank, a well-known sociologist whose

scholarly interests include the meaning of illness and interactions with professionals and

institutions, suggests, “We should speak less of ethics as some activity or substantive

content that appears to stand alone and more of ethical relations” (2004, 357). In the case of

Omar, below, if the defensible option is transferring him to an outpatient program, how this

is explained remains important ethically. If the explanation about the pending discharge

from hospital and transfer to a community program is condescending, dismissive, and

implies the decision is non-negotiable, Omar’s defensiveness, anger, and non-cooperation

should surprise no one. Unethical language, tone, and demeanour can transform what

seems, at the time, to be a good option---all things considered---into a poor and

unpersuasive option.

Frank cautions against excessive emphasis on decision making when he states that:

“Being ethical… has less to do with making a single decision than with initiating a

process–--often a very slow process---of a person or persons coming to feel that how

they acted was as good as it could have been, given the inherent impossibility of the

situation (Ibid, 355-6).

Although “inherent impossibility” is meant to refer to healthcare situations typified by

complicated machinery, invasive procedures, and life-threatening events (e.g., in intensive

care units, in operating rooms, and in emergency departments), Frank’s point holds true for

long-term mental illnesses and substance use problems, too. Accordingly, this chapter’s

second noteworthy consideration is participants’ characters or who they are, from both the

Ethics Related to Mental Illnesses and Addictions

perspectives of important people in their lives and from their own perspective. In modern

bioethics discussions and analyses, virtue ethics as an ethical theory has tended to rely on

Aristotle’s Nicomachean Ethics (350 B.C.) and contemporary philosopher Alasdair

MacIntyre’s After Virtue (first published in 1981). More recently, philosopher Lisa Tessman

has insightfully examined the durability and praiseworthiness of character virtues in

progressively oppressive and harsh situations and societies. Burdened Virtues: virtue ethics for

liberatory struggles (2005) is a welcome rehabilitation of virtue theory such that it is highly

relevant for mental health and addictions settings because unfortunately these settings can

be restricting, stigmatizing, and marginalizing.

The remainder of this chapter starts with a description of seven cases and then describes

ethically salient concepts and values for mental illnesses and addictions’ questions, issues,

and situations. Admittedly, some of these concepts are meaningful for any illness, injury or

health condition. Nonetheless, certain ethical concepts are especially meaningful for serious

mental health and addiction problems. Concluding this chapter by identifying and applying

ethical values relevant to each of the opening seven cases might be the expected ending. The

experiences of a newly-minted ethicist explain why the actual conclusion is somewhat

different.

Daniel Sokol (2007) wrote a perceptive editorial piece in the BMJ describing his first days

and weeks as an ethicist in a large general hospital in London. Surrounded by innumerable

procedures, treatments, and appointments as he accompanies a nephrologist, Sokol observes

that, “My proximity to the patients, instead of highlighting the ethical commitments,

obscured them” (670). It took awhile before he could see beyond what was urgent and close.

With time, he began to see the underlying ethical quandaries, unasked questions, and

troubling assumptions. His personal experience underscores an ability or skill that is critical

for strong ethical analyses and responses: awareness or discernment (Holland, 1998;

Nussbaum, 1985).

In this light, the section on ethical concepts and values is followed by four sections

describing other considerations that bear significantly on what constitutes a strong

ethically defensible decision or response for mental health and addictions issues and

questions. These four sections cover clinical, legal, organizational and systemic factors

that cannot be ignored or dismissed by those endeavouring to understand and respond

well ethically. In healthcare, ethics does not stand alone…. an unfortunate notion that can

be reinforced when ethics specialists dramatically “parachute in” to meet briefly with a

clinical team and the patient/family and leave just as quickly. Moreover integrating all

five aspects means that ethics never trumps everything else (Russell, 2008). It is both naïve

and impractical for an ethicist to say, “Just do what is most ethical to do in this situation.”

Therefore this chapter’s concluding section re-visits the opening cases and identifies their

ethical, clinical, legal, organizational, and systemic considerations and analyzes what

qualifies as strongly ethical decisions and, as per Frank’s wisdom, ethically strong

interactions and characters.

Stylistic note: Many people consider the term “mental illness” to include addictions. In this

chapter, however, they routinely will be referred to separately to ensure that addiction

problems are not overlooked. Instead of “substance dependence, misuse, and abuse,” the

word “addiction” is used to help reduce this chapter’s length. Ethical worries about the

word will be discussed in section 6.1. Recently, however, various professionals have

recommended “addiction” be used in the future DSM-V, the diagnostic manual of North

American psychiatry. Different words are used to refer to those living with a mental health

Bioethics in the 21st Century

or addiction problem, such as patient, client, consumer, and survivor. “Client” will be used

most often in this chapter because it portrays a reasonable balance in the power and

interests between the individual and healthcare professionals and organizations and

because most people with these health problems access treatments while living in the

community.

1.2 Prototypical cases

The following cases illustrate the ethical complexity of everyday practices and interactions

in mental health and addiction settings. It is accidental and unintentional if any case is

identical to a real event or person. The cases, however, have been written to be

representative amalgams of common situations and issues. All names are hypothetical and

used for easier reading and to underscore the human and personal dimensions.

Case 1: Noticing that “Sergei” looks flushed, talks rather loudly and directly, and his breath

smells mint-y sweet, the community health clinic nurse asks him whether he has had a few

drinks this morning. He chuckles, shifts nervously on the examining table, and says, “Well,

not really.” “Nothing?” she responds. He looks down at the floor and says “No.” This is

Sergei’s fourth visit for recurring back and leg pain and stiffness. Test results and

recommendations from a hospital-based specialist have just arrived. She proceeds to test

and document his reflexes, blood pressure, pulmonary-stomach-bowel sounds, heart rate,

and temperature.

As she walks down the corridor to see the next patient, the nurse suddenly wonders

whether Sergei, who is 46 years old and immigrated with his wife and 2 children from

Russia five years ago, drove to the clinic “under the influence” and whether he drinks and

drives regularly. She vaguely recalls that he presented the same way at a previous

appointment. There is provincial legislation that requires physicians to notify the

Transportation Ministry if they believe a patient has a medical condition that makes his or

her driving dangerous. The nurse asks herself, “The doctor who will talk with Sergei about

the specialist’s report… should I tell her about what I am thinking or will she make her own

decision when she sees him?”

Case 2: About 2 weeks ago, “Ana Li” was admitted to the mental health unit from the

emergency department (ED). Ana Li’s mother brought her to the ED because Ana Li was

experiencing hallucinations, not thinking clearly, and becoming more and more upset and

frenetic. Since admission, Ana Li has resumed taking previously prescribed medications for

bipolar disease (she is 19 years old and was assessed as having the capacity to legally

consent to treatment). Although she has attended a few of the unit’s weekly group activities,

sustained or in-depth discussions with her are not yet possible so psychotherapeutic options

have not been offered thus far.

During this morning’s team review of all their clients, one member mentions Ana Li’s

continuing hypersexual statements and wishes, and asks whether anyone else worries she

will act on them. He suggests her status should be changed from “voluntary” to

“involuntary” for awhile and she be restricted to the unit because she may trade sexual

“favours” in return for cigarettes from co-clients or someone she meets on or near the

hospital grounds. Another team member shakes her head and says, “The Mental Health Act

is more interested in preventing major harms like suicide or assault, not casual sex.”

Another team member immediately adds, “But we have to be realistic about this. Hasn’t

each one of us remarked how ‘drop dead gorgeous’ Ana Li is? Plus if there’s unprotected

Ethics Related to Mental Illnesses and Addictions

sex, then we are going to be dealing with a sexually transmitted disease or even a

pregnancy.”

Case 3: One of the organization’s clinical directors has been working there for almost three

months. By introducing new initiatives, he has two goals for today’s monthly meeting with

the clinical managers and professional heads: (1) to move the program more quickly to the

forefront of contemporary mental health and addictions practices, and (2) to be a role model

for continuous innovation. One initiative will require at least one home visit for all new

referrals in order to understand more quickly and thoroughly clients’ individual lived

experiences, available supports, and enduring barriers to recovery. The second initiative

involves hiring a peer support worker to be a member of each clinical team. Peer support

workers serve as unique resources and supports to clients because they have personal

knowledge both of living with a mental health or addiction condition and of some of the

different ways that family and friends, the healthcare system, the legal system, and social

service organizations may and may not contribute to recovery. The director is unsure

whether his plans will be met by eagerness, defensiveness, or stony silence.

Case 4: A judge rules that “Jane,” who is 68 years old, should not be jailed as punishment for

assaulting her landlord when he said she would be evicted in seven days if her apartment

remained a fire hazard and malodorous. The landlord fell trying to dodge Jane’s fists and a

resulting cut required an emergency department visit and six sutures. The judge’s ruling

diverts Jane to a psychiatric facility for treatment of a mental health condition that results in

extreme hoarding behaviour. Review Board hearings are scheduled after the first six months

of hospitalization and then every twelve months. Jane is not swayed by her Legal Aid

lawyer’s advice that she not testify at the first hearing because her nervousness and anger

may persuade the Board to not change the order. She testifies and is very nervous, quite

disorganized in her responses, and uses some clearly racist language. The Board does not

change the mandatory hospitalization order. The next hearing is in one month. Her clinical

team believes Jane has improved from her participation in eleven months of behaviour

therapy, trauma counselling, and medications, such that they will recommend conditional

discharge into the community. Yet a few team members worry that her lawyer will let her

testify and her nervousness and inflammatory comments will again persuade the Board to

continue the hospitalization order.

Case 5: “Omar” has lived with moderately severe schizophrenia for 30 years; he’s now 52

years old. He has lived in different group homes and subsidized housing, has not been close

with most of his family since young adulthood, and relies financially on a modest

governmental disability program. Omar has inconsistently taken and sometimes

discontinued taking various typical and atypical antipsychotic medications for different

reasons: the bothersome and discouraging side effects, not wanting to depend on drugs, and

simple forgetfulness. Emergency hospitalizations have been required from time to time in

order to re-commence or revise medications to reduce distressing thoughts and

hallucinations as well as to re-connect him with the community mental health agencies in

and near his town. Omar’s general health is poor: pulmonary and cardiovascular problems

due to chronic smoking and, as a likely result of long-term antipsychotic medications,

diabetes, which has been poorly controlled.

Police officers bring him to the psychiatric emergency after finding him asleep in a cold alley

on a night when the temperature dips nears freezing. He is hospitalized to resume his

Bioethics in the 21st Century

psychotropic medications and to try to find a housing facility that offers a modest level of

supervision. Since hospitalization, Omar’s leg and foot ulcers unfortunately have increased

in size and depth despite antibiotic administration. Efforts to keep the ulcers clean and

bandages on and clean typically have resulted in arguments between nursing staff and him.

The standard of care for the diabetic ulcers now requires debriding and deep cleaning,

which will need to done at a nearby tertiary hospital by a specialist. Two weeks ago, Omar

agreed to the proposed debridement. On the morning of the appointment, however, he tells

the staff member who will accompany him to the hospital, “There is no way I am going to

any hospital.” Over the next few days, his assigned nurses explain the benefits of the

specialist visit and debridement. He eventually agrees again to go because “I don’t want to

lose my foot.” The visit is scheduled for the following week. A week passes. Today when a

staff member says “Omar, it’s time for us to head over to see the specialist about the sores

on your foot and leg,” he replies, “No thanks. I don’t want someone digging around my foot

and leg. I’m staying here.”

Case 6: The concurrent disorders (comorbid addiction and mental illness) program is

organizing a special day-long workshop to increase community-based physicians’,

therapists’, and addictions workers’ knowledge and support for families with a member

who has gambling or prescription opioid problems. Four smaller community-based services

were invited to help organize the workshop as a way to increase collaboration among the

organizations. To attract more physicians, therapists, and addictions workers, two

prominent speakers have been invited and the venue will be at one of the area’s nicer hotels.

Representatives from each partner organization are discussing ways to cover the costs of the

hotel’s food and beverage services, room rental, and the speakers’ travel expenses. Setting

the registration fees high enough to cover the costs will likely discourage too many workers

at smaller agencies or programs from attending. One of the representatives suggests

contacting the regional pharmaceutical representative and a local brewery representative to

make a financial donation. Another representative suggests having a raffle for a “fancy spa

weekend” as a way to increase the number of registrants.

Case 7: “Sandra” and her partner permit her older brother “Edward” to move into their

home while he looks for somewhere affordable to live near his new job. Since she uses many

of the household practices they grew up with, Sandra knows her home is a place of comfort

and love for him. He promises to see his therapist every three weeks and to have a

community physician renew his psychiatric medication before there are only ten pills left. It

is important to hear him explicitly commit to seeing the therapist and taking the

medications because in the past, he has become so ill that he often verbally abused and

threatened those with whom he lived, such as a favourite uncle and his family.

Five months later, Sandra contacts the physician---whose name she finds on the prescription

bottle---to ask if crushing the pills into Edward’s food decreases their efficacy. She had

started doing this two months ago when she learned that Edward had stopped taking the

pills because he believed he no longer needed them and subsequently became angry when

she reminded him of his earlier promise. Since then, whenever Sandra has found a new

prescription slip for the psychiatric medications in Edward’s room, she has had it filled by

the neighbourhood pharmacist. Yet whenever the physician asks Edward at their

appointments whether he is taking the psychiatric medications and feels they are helping,

Edwards always says he is taking them as prescribed and they seem to help. The physician

refrains from telling him about the conversations with his sister and her actions because he

Ethics Related to Mental Illnesses and Addictions

believes that the medications, residing in a home environment, and the sister’s involvement

are in Edward’s best interests.

2. Foundational ethical considerations

A familiar claim by those working as ethics specialists in hospitals and those teaching

healthcare ethics is “It’s ethics all the way down.” Ethics involves what should matter or

what should be valued and based on such values, what should be our aspirations,

behaviours, and relationships. The word “should” is important here; in philosophical

settings, “should” represents the normative element of ethics. There is a critical difference

between what is valued and what should be valued. We must ask what are the reasons to

value something and whether they are defensible or justified reasons. It is important to

underscore that not all values are ethical, though everything that is ethical is based on

values. This distinction is often disregarded in healthcare ethics.

Healthcare is informed by a host of values, including self-interest, economics (which can

include efficiency and productivity measures), reputation, relationships, and politics (i.e.,

power). For example, a decision to generate added revenue by charging to train community

workers can be justified by economics. To justify it ethically, though, the added revenue

would have to be used, for instance, to provide more recreational activities for clients’

enjoyment and rehabilitation. If the additional monies were used to increase the agency’s

profile as the area’s “go to” agency, then its justification would be focused on politics

and/or reputation. Further examination would be required to determine if a better

reputation will or will not contribute to achieving the agency’s ethically defensible goals.

2.1 Being humane

It seems obvious that illnesses do not detract from being a human. Yet being a human, that

is a member of the homo sapiens species, is not the same as being humane. “Being humane”

typically means thinking, behaving, and interacting in certain ways. In the context of mental

health and addictions programs and services, being humane warrants discussion because it

may be what is first sacrificed when units are busy and staff levels are low.

Much has been written in the ethics literature and the nursing literature about the

importance of caring and compassion: 21,246 articles and 1,285 articles respectively are

listed when these key words are used with CINAHL, a primary nursing database. It is

important, however, to distinguish between caring/compassion and respect because they

are made manifest by different actions. If a close friend of someone unable to leave his home

due to a relapse of his depression arranges an outing that will be as “easy” as possible to

accept, this is an act of caring. Prior to deciding whether to go, if the depressed person

listens carefully to what has been arranged and why specific arrangements have been made,

this is an act of respect. If a case worker has a few toys in his office to occupy clients’

children and does not keep clients waiting more than five minutes beyond their

appointment time, he has been, respectively, caring and respectful. As Frank incisively

points out, “Being ethical… is never anything that one has” (2004, 356). It is something one

does or strives to do. Skilfulness is relevant to ethics, just as it is to nursing and case

management, in terms of astutely discerning what is required and how it can best be

accomplished. Ineptness should not be repeatedly forgiven simply because the person had

good intentions.

Bioethics in the 21st Century

Being humane should also include generosity and welcome, two qualities often

overlooked in everyday interactions. Generosity is not about money. Instead it is a

philanthropy of spirit and hope wherein people are pro-the Other. Yet this generosity

does not equate to strident self-sacrifice and Puritanism. It involves giving but it can be in

small, subtle ways. While generosity is a giving or contributing to, without expectation of

return, welcome is a taking in wherein the presence of the Other is appreciated. The

history of mental health and addictions work and settings includes far too little generosity

and welcome. This constitutes an ongoing challenge for contexts in which police powers

can be employed: how to once again be seen as generous and welcoming after a client has

lost some basic civic rights and freedoms (e.g., involuntary hospitalization, use of a

seclusion room)? Welcome and generosity can fade in the wake of efficiency measures,

bed flow pressures, staff shortages, and management by statistics; operations may

improve economically, but not ethically.

Finally, being humane means relationships are inescapably important, given that human

beings are social creatures. In health care settings, ongoing attention must be paid to

honouring and maintaining appropriate boundaries between clients and staff. This can be

especially challenging because workers utilize various methods to examine and influence

highly personal and intimate aspects of clients’ behaviours. Moreover clients may not

have many affirming and reliable relationships, often due to their illnesses’ symptoms,

which, in turn, cause family and friends to disengage. Healthcare workers may believe

compassion justifies them filling this relational void by taking on the role of friend,

family, or confidante. This erroneous belief increases the likelihood of enduring boundary

crossings or repeated boundary violations. It is not surprising that medical and nursing

books and curricula routinely discuss maintaining appropriate professional relationships

and avoiding inappropriate personal relationships, boundary crossings and boundary

violations.

Being humane can be most challenging when staff work with individuals who are

diagnosed as having a personality disorder. While the resulting behaviours seriously test

the therapeutic alliance, too often the label of “difficult client” or “difficult patient”

predetermines all activities and it becomes a self-fulfilling prophesy (Hilfiker, 1992;

Knesper, 2007; Lauro et al., 2003). In the case of those diagnosed with sociopathy, public

rhetoric has often labelled these people as “criminally insane.” Since they appear not to be

motivated by common morality, these individuals may be judged to be less than human.

When working with clients with personality disorders, healthcare workers must avoid such

moral judgments. Healthcare and health professions’ mandate is to help preserve and

restore health and well-being and alleviate suffering, irrespective of inferences about a

person’s goodness or badness (Pouncey & Lukens, 2010). With this said, though, employers

must provide effective forums and measures to alleviate a worker’s fear of a specific client

and to prevent or address dislike of or negative feelings towards certain clients (e.g.,

someone convicted on infanticide). The concept of countertransference is well-known in the

psychiatric and psychological fields. It is a professional’s response to a client’s behaviours or

statements such that the professional shifts into an inappropriate role (e.g., parent,

disciplinarian, rescuer). Psychiatry and psychology textbooks and courses teach ways to

prepare for, recognize and effectively address countertransference. Similar attention to the

psychological responses of other allied health workers is needed because their negative (or

sometimes unchecked positive) feelings and attitudes can obstruct clients’ recovery.

Ethics Related to Mental Illnesses and Addictions

2.2 Being a person

Personhood or being a person is a longstanding concept in academic communities,

regardless of whether it is political science, sociology, theology or moral theory. Much

debate has been generated because of its political, legal and ethical significance: those who

legitimately qualify as “persons” must be accorded a certain level of attention, respect, and

assistance while “non-persons” can be accorded less. Various philosophers have developed

different definitions of personhood. For instance, British philosopher John Locke held that a

person was a being with a complex, psychological conscious that continued over time.

Focusing on consciousness, cognition, and affect meant that as time passed, people with

progressive dementia would become different people compared to their former selves and

when certain defining abilities faded, non-persons. Alternative definitions have been

offered; for example Rosfort and Stanghellini hold that personhood is “the identity of an

embodied self, which is embedded in a coexistence with other selves through time” (2009,

286). Grant Gillett (2002) appeals to a cumulative and evolving narrative of “my life” while

Bruce Jennings (2009) posits the “memorial person” wherein someone with advanced

dementia remains a person and connected with her earlier years through the memories of

those around her.

Farah and Heberlin (2007) present various theorists’ definitions of personhood to

demonstrate that consensus in defining such a potent concept still does not exist yet. In fact,

Tom Beauchamp (1999) recommends discontinuing efforts to refine the moral or

metaphysical attributes of personhood. He favours working on concepts that more directly

capture the lived reality of daily life. In the case of mental illnesses, clinician, family,

employers, and the general public’s interest can be focused on psychiatric diagnoses,

impairing symptoms and behaviours so much that individuals are de-personalized.

Hospital and governmental agencies’ operational and administrative practices can

depersonalize, too.

De-personalization is ethically indefensible because the individual is not recognized as

unique (Peterneliji-Taylor, 2004; Sierra et al., 2006). Instead forms and computer programs

can average or homogenize clients such that they become “another case of X” or as Flanagan

et al. note, “the medical chart.” De-personalization silences such that the individual’s unique

perspective, lived history, and hard-won expertise are not sought or are ignored. Moreover

“othering occurs in relationships between the powerful and the powerless, where

vulnerabilities are exploited and where domination and subordination prevail” (Peterneliji-

Taylor, 133). French philosopher Emmanuel Levinas’ work counters de-personalization by

morally and positively privileging the Other and his presence-to-me (Burns, 2008; Nortvedt,

2003; Standish, 2001). Simply put, if I am in the presence of someone else, I am automatically

and inarguably obliged to respond to him and respond in certain ways.

Respect is one of the most popular concepts employed to avoid de-personalization in mental

health and addictions settings. Too often, however, determining what actually demonstrates

respect in a particular situation with a particular person or group of people receives scant

attention. Instead a kind of basic civility is considered sufficient. But it is not, especially

when healthcare institutions and clinicians are expected to provide high quality treatment

and care. Preventing de-personalization of individuals with mental health and addictions

problems requires Levinas-ian active engagement with them and equal acceptance plus a

kind of existential attention and presence. Processes for information disclosure, clinicians’

truth telling, and obtaining informed consent can dominate routine interactions with clients

and their families such that little consideration is given to clinicians and staff being with

Bioethics in the 21st Century

clients and families. The effect is eroded personalization of clinicians and staff as well as of

clients and families. In other words, healthcare workers also become interchangeable, “all

the same,” and regrettably for those they serve, forgettable.

2.3 Being a member of a community

In mental health and addictions, considerable focus is paid to people’s rights and freedoms.

This makes sense because it is so common for others to intervene to limit individual

freedoms and obstruct the exercise of rights. Ethics related justification for such interference

typically comes from safety concerns, either for the individual herself or for others.

However a hidden, but common, concern is the existence of double standards wherein those

with suspected or diagnosed mental health problems are not permitted to do certain things

while the rest of society are. Some examples help make this point. Restrictions on sexual and

intimate activities between hospitalized clients are often excessive. The only permitted

activities are those deemed socially responsible, such as not engaging in “casual sex” or

“risking a pregnancy.” And yet a common freedom is for people to decide how sexually

active they will and will not be. Moreover women are permitted in many countries to seek

an abortion, especially before the third trimester, so it is discriminatory to summarily hold

that women with mental health concerns must always act so that pregnancy avoided. A

more ordinary example of double standards involves medication regimens. Exercising,

eating balanced meals, getting sufficient sleep, and drinking enough water contribute to

feeling and performing well. Most people do not engage in such activities consistently. In

general, people are non-compliant. Yet those who have mental health problems are expected

to be highly compliant with their medications and non-compliance is summarily often

assumed to reflect abnormally impaired thinking abilities and motivations.

The notion of citizenship moves people with mental illnesses “beyond the mere allocation or

management of financial or physical resources and implies instead a form of moral

assistance that calls for their full participation” (Perron et al. 2010; 108). Rights and freedoms

associated with citizenship are ethically very important. But what is often disregarded is

whether a person belongs within general society and within different sub-groups that are

meaningful to him. Belonging here emphasizes that the person is a valued and equal

member such that if he is absent, he is missed and he owes other members certain things just

as they owe him. He is accepted “as is,” both in terms of recognizing inescapable human

fallibility, inconsistency, strengths, aspirations, and all that has led him to be who he is here

and now. This goes beyond emphasizing the provision of quality services to those with

mental health and addiction worries. Citizenship and belonging focus on membership

within a particular network of relationships. Discrimination and marginalization can result

in the person being “not of us” and outside the community or relegated to its impoverished

and lonely margins, both of which are existentially cruel.

Another often overlooked communal factor focuses on expectations. Too often the general

public expects too much of people with mental illnesses and addictions because they do not

give adequate weight to the impact of the social determinants of health, stigma and the often

discouraging chronicity and relapse of these illnesses. On the other hand, society can be

overly paternalism and sympathetic such that too little is expected. Opportunities are not

taken to encourage and applaud people’s perseverance, kindnesses, resourcefulness, and

lived expertise. Instead focus can be merely about psychological and behavioural symptoms

of the illness and the prescribed therapies and treatments, not about the kind of person he is.

Ethics Related to Mental Illnesses and Addictions

He becomes defined by the illness. This ethically troubling reductionism explains why many

eschew language such as “he is autistic…” or “schizophrenics are…” and instead speak

about “those who are living with depression” or “he has a borderline personality disorder

diagnosis or traits.”

2.4 Being a caregiver/provider

There is empirical evidence that family and friends provide significant assistance and

support for those with mental health and addiction problems. This often presents practical

challenges if applicable legislation regarding personal health information prohibits

disclosure to family members without the client’s explicit consent. In most instances, mental

illnesses are not yet curable; they are long-term health concerns. This means that family and

friends are even more important in supporting someone through expected relapses. Some of

these relapses can be highly damaging to these relationships: for instance, dementia often

results in aggressive behaviours as well as dis-inhibition (e.g., undressing, frequent

swearing, sexual remarks). Mental illnesses can result in frightening behaviours such as

verbal, psychological, and physical aggression, loss of property (e.g., if a person has

gambling problems or drives while impaired), and more. Therefore, family members may

require emotional and psychological help to deal with their fears and distress as to the

shared impact of the person’s mental illness or addiction. Family members can become

secondary “sufferers” of a particular illness or addiction.

The unique nature of psychiatrists’ and therapists’ work “[places] additional ethical

demands on practice” (Radden & Sadler, 2010, 59). Meaningful therapeutic engagement

requires entering into the inner lives of clients, examining and often times challenging

clients’ interpretations, beliefs, self-image, fears and hopes. Clinicians may learn details that

no other person in a client’s life knows. In the name of safety, healthcare workers are

permitted, often expected, to use governmental or police powers that will violate

fundamental rights and freedoms. Accordingly, professionals’ characters are very

important. Radden and Sadler identify a considerable number of characterological virtues

and offer detailed explanations as to why they are essential to the routine or everyday work

of psychiatrists and therapists. The needed traits include trustworthiness, self-knowledge,

integrity, empathy, warmth, sincerity, authenticity, unself-ing, “respect for the patient and

the healing project,” and more (Ibid, 136).

In forensic settings, a common concern is divided loyalties wherein professionals and

healthcare teams are expected to prevent the individual from harming others and violating

civil or criminal laws, and yet work with the person to build a therapeutic alliance to help

recover from the illness or disorder. When clinicians are asked to assess a person for the

court’s purpose, it is essential that the person understand that the clinician is acting for the

benefit of the court, not for her benefit. In this case, the overarching fiduciary responsibilities

of physician-client or nurse-client are suspended to a certain extent. If the psychiatrist or

therapist is unable to have a different relationship with the client in doing this assessment, it

is ethically wise for him to decline to do the assessment. The general public often does not

appreciate the inherent tensions between healthcare systems’ and clinicians’ roles and the

judicial system and lawyers’/police roles, especially when the public’s fears and biases are

exploited by the media or by political interests. Yet the value conflict between these two

systems is ethically necessary, as discussed in the sections below.

Bioethics in the 21st Century

3. Why science, technology, and clinical factors matter ethically?

Compared to many physical medicine interventions and programs, mental health and

addiction services and treatments face added challenges that have ethical import. The

following three issues clarify these challenges.

3.1 Our knowledge about mental illnesses and addictions

As Schmidt et al. note, “Definitions of mental illness tend to contain two aspects: a

normative element and a functional element. Normative definitions delimit abnormal

behaviour in light of what is typical, usual, or the norm…. [while] maladaptation suggests

some diminished capacity to function relative to the average” (2004; 10). Yet authoritative

statements of knowledge and fact are fewer in psychiatry and psychology than in physical

medicine. Individual experience and subjectivity still inform most psychiatric diagnoses.

Scientific uncertainty continues, as illustrated by briefly describing the evolution of

psychiatric classifications.

In 1948, the World Health Organization created the International Classification of Diseases

(ICD). In 1952, the American Psychiatric Association (APA) published the Diagnostic and

Statistical Manual of Mental Disorders (DSM), a short glossary of different psychiatric

disorders based on psychoanalytic theory. This was considered a positive first step because

various disorders were identified and publicized for the practice community’s use. Yet the

DSM-I was not widely embraced because the disorders were relatively broad, the

descriptions quite brief, and many practitioners were not Freudians. Sixteen years later,

DSM-II was published, but the changes did not significantly resolve the first version’s

limitations. However DSM-III (1982) was different. It was reputedly not theoretically

grounded. Instead, its diagnostic categories were based on observed and reported

behavioural symptoms. It garnered praise from the psychiatric community because its

multiple axes of contributing problems represented the disorders’ complexity more

accurately. Moreover, the categories and diagnostic criteria had higher inter-rater reliability

(Pincus & McQueen, 2002; Schmidt et al., 2004; Wilson & Skodol, 1994). DSM-III-R (1987)

included various clarifications and corrections. While DSM-IV (1994) was much like its

predecessor, how it was created was particularly noteworthy: expert teams’ consensus about

each disorder was augmented by input from the psychiatric community at large as well as

those involved in revising the ICD. DSM-IV also was based on scientifically stronger

empirical (as opposed to anecdotal) evidence. Although DSM-IV-TR (2000) reflected no

major revisions, it did provide various clarifications.

During this period, an anti-psychiatric movement emerged in the United States. One of its

best known proponents is the psychiatrist Thomas Szasz (2009; 1976; 1961). He contends that

very few disorders are brain-based or organic. Instead, the majority of DSM-IV disorders

reflect personal preferences that do not comply with social norms. As a result, these people

experience difficulties in daily life. Those who feel that the harms of “mis-fitting societal

norms” outweigh the benefits can, if they wish, seek assistance from other people to reduce

or eliminate such difficulties. But since the maladies are not physiological, says Szasz, it

makes no sense to seek physicians’ and medical programs’ assistance.

The anti-psychiatry movement endures today. In fact, some individuals and advocacy

groups embrace the term “madness” as one way to counter what they believe is psychiatry’s

and medical institutions’ illegitimate and hegemonic power and authority (Foucault, 1988;

Wilson & Beresford, 2002).

Ethics Related to Mental Illnesses and Addictions

The epistemic process of typological knowledge creation is often called nosology, or medical

classification/categorization. Nosology continues to be an issue in mental health and

addictions work because the questions still remain: “What makes something a mental [or

addictive] disorder? and, Does this something form a category?” (Schmidt et al.; 11). In 2012

or 2013, the APA will publish the DSM-V. It will include a new framework or approach:

dimensions, rather than mainly categories. There will be two general kinds of dimensions.

First, clinicians’ diagnoses will take into account the severity of symptoms, rather than

mainly their presence or absence. Second, there will be “cross-cutting” symptoms, such as

anxiety and suicidality, which occur in many illnesses. As a result, some disorders are

expected to be de-listed and some new ones listed. In other words, some people will no

longer have a psychiatric diagnosis, some people’s diagnoses will be refined, and some will

be newly diagnosable. Professional debate about the advantages and disadvantages of this

new approach has been pronounced (Banzato, 2004; Collier, 2010; Helzer et al., 2007;

Kraemer, 2007).

A similar debate is in progress in addiction treatment and care. Is an addiction to alcohol,

tobacco, illegal drugs, or prescription drugs some type of disease, or a personal choice, or

something else? The most popular alternative to the disease paradigm considers addictions

to be more complex: they are the combined result of biological, psychological, and

sociological factors. Researchers and practitioners differ as to which paradigm they believe

is most accurate. But the ethical implications of this difference are real. People who develop

cancer, psoriasis, or glaucoma are generally not considered ethically culpable for the loss of

important abilities or for requiring publicly funded health services. If alcoholism is deemed

to be a disease, then the alcohol dependent person may not be blamed for “having it.” This

is a welcome correction to the traditional moral condemnation of people with drinking

problems. If responsibility follows causation, then a biopsychosocial explanation presumes

something different. People’s physiology, psychology, and social environment are

presumed to be self-controllable and modifiable, albeit not totally. They are also presumed

to be modified by other people’s actions and inactions. Accordingly, if there are negative

consequences, culpability for what could have been changed must be shared, rather than

resting solely with the individual. The locus of responsibility relative to having an addiction

matters ethically because it connects with the ethical concept of fairness. This concept of

fairness, and more specifically equality and equity, helps determine the amount of publicly

funded versus privately funded services individuals with an addiction problem should be

able to access.

3.2 Treatment and care

Those who are not psychiatrists, psychologists, or addictions therapists may not realize how

very diverse available treatments and therapies are. For instance, there are more than two

hundred psychotherapies, clustered, for example, as cognitive behaviour therapy, family

therapy, mindfulness, art therapy, psychoanalysis and more. This increases the uncertainty

and complexity of finding the therapy that will benefit a particular person most or at least

sufficiently. In the case of psychopharmacological treatments, they have had a checkered

history. In the 1950s, new medications were hoped to provide effective and sustainable relief

of illnesses’ disabling symptoms... a promising change from the seeming unending-ness of

psychotherapeutic counselling and from the irreversibility and extreme invasiveness of

psychosurgeries. In addition to the physiochemical benefits, medications could also be

Bioethics in the 21st Century

administered without a client’s cooperation or consent. This was not possible for

psychotherapies. They could not be beneficial if the person was not in the appropriate stage

of change and was not willingly engaged, irrespective of whether she or a substitute

decision maker had consented.

The first generation of antipsychotic medications or “typicals” unfortunately caused too

many people very serious and irreversible side effects such as tardive dyskinesia. The next

generation of antipsychotic medications, the “atypicals,” were expected to cause fewer side

effects. While second generation drugs have helped many people, the long-term effects are

discouragingly negative. For instance, individuals diagnosed with schizophrenia may

develop diabetes due to some of these medications (Amiel et al., 2008; Lowe & Lubos, 2008;

Muench & Hamer, 2010). Yet it takes years and millions of dollars to develop a new

pharmacological treatment that can offer meaningful improvements, not just in terms of

biochemical or physiological measures, but in terms of quality of life measures as well. The

negative effects of medications, such as significant weight gain, slowed thinking, and

sluggishness, help explain in part why people discontinue using them, only to find that they

relapse into a serious state that may require emergency or involuntary hospitalization.

From the outset, funding of research of mental illnesses and addictions has been

disproportionately low compared to funding of research of physical illnesses. In 2004-2005,

for example, the Canadian Institute of Health Research devoted 7.5% of its $700 million

budget to mental health and addiction (Senate Standing Committee, 2008). Yet

approximately 20% of Canadians have a mental health problem during their lives. In the

same year, the U.K. spent 6% of its £ 950 million governmental health research funds on

mental health (Kingdon & Nicholl, 2006). In 2011, the American National Institutes of

Health will allocate only 4% of its budget to the National Institute of Mental Health

(National Institutes of Health, 2010). Consequently, available treatments and therapies are

often less reliable and less specific than those for various medical problems. Moreover, more

research funds are spent on pharmacological interventions compared to psychotherapeutic

or alternative interventions, in part because the pharmaceutical industry spends almost as

much as governments on healthcare research (World Health Organization, 2004). This

means that new or more effective psychotherapies are less likely to be developed and that a

proportion of research funds are used for economic purposes, namely improving a

medication’s competitive marketability and profitability.

3.3 Daily practice models

Different clinics and hospitals offer markedly different addiction and mental health

treatments and programs (Finney & Moos, 2006; Futterman et al., 2004). For instance, one

addictions program’s work may be guided by harm reduction principles. Familiar examples

of a harm reduction approach are safe injection sites and methadone maintenance programs

for ex-heroin users. Another program’s work, however, may be guided by an abstinence

model of treatment. Furthermore, what counts as harm reduction can differ considerably

among clinicians (Miller et al., 2008). They may calculate the benefits and harms of a

particular activity differently; for instance, providing information about different settings

for alcohol consumption and their relative risks. Just as importantly, though, clinicians’

opinions may differ regarding the morality of said activity. For example, accepting a client’s

decision to begin taking taxis during weekend drinking binges as harm reduction may seem

Ethics Related to Mental Illnesses and Addictions

to condone the client’s wilful drunkenness. Some clinicians believe this clearly violates their

professional ethos; others do not (Miller; 2008).

Models of care for mental health settings are also diverse: for instance, strengths-based,

empowerment-focused, recovery, trauma-informed, custodial, rehabilitative, and sanctuary.

As a result, how clients are seen and engaged by clinicians and teams will vary. A strengths-

based approach, not surprisingly, attends to clients’ positive abilities to deal with and

improve their health and circumstances. An empowerment approach emphasizes correcting

historic and current power imbalances---typically profound imbalances---between people

with a mental health or addiction problem and professional caregivers and their institutions

or between these same people and society at large. The ethical concepts of agency, self-

determination, voice, and liberation resonate with empowerment. A recovery approach

focuses on a person’s valuations, aspirations, interpretations, and pace and it adopts “the

long-view” wherein recovery is acknowledged to be an ongoing and unfolding journey. As

shown in Gagne et al. (2007) and Ontken et al. (2007) in relation to recovery, focal ethical

values are narrative integrity, resilience, commitment, and fallibility.

It is ethically important to identify and understand the practice model relevant to a

particular treatment situation because inherent ethical values can vary. In terms of a specific

program’s model of care, an ethics-related goal should be coherence among the model’s

foundational values, staff-client interactions, and the kinds of therapies and care offered.

However, models can become out-dated as more is learned about what helps clients

maintain and regain important activities and relationships, as other programs and systems

change, and as certainty increases regarding what qualifies as mental illnesses and effective

interventions.

Psychiatry, psychology, and case management qualify as “forensic” when they are applied

to and used in our justice system. These include scientific and theoretical analyses of

criminal behaviour, clinical and institutional/communal efforts to prevent or deter law-

violating behaviour, risk assessments and diagnoses for judicial proceedings, and police

psychology. Ethically critical to this work is separating understanding why a person

behaved in a certain way---in terms of “nature and nurture”---and morally judging him or

her. Conflating nature and nurture or conflating biological processes and socializing

processes typify anti-psychiatry’s worries.

4. Why law and regulations matter ethically

It is sometimes said that mental health and addictions services and settings are dictated by

laws and legal institutions, be they the courts, legislatures, regulatory agencies, prisons and

jails, or the police. A common concern is that society uses its various powers for its collective

interests to the detriment of individual or minority interests. This concern is historically

accurate in many countries in terms of how they have responded to individuals with mental

health or addiction problems. Too often, these responses were dictated by social norms for

acceptable behaviours and appearances. If the behaviours or appearances violated these

norms and rules, common responses were punishment, social expulsion, controlled

quarantine, surgical interventions, and even death. However, there were often

compassionate individuals and religious-based groups that countered societal edicts by

offering agapic assistance and places of sanctuary to people seen as innocent sufferers of

cravings or disordered thinking.

Bioethics in the 21st Century

4.1 Rights and duties regarding decision making and consent

Personal decision-making typically is one of the first ethical concerns in healthcare settings

or issues, in large part due to the courts and legislatures. Today, healthcare involves many

therapies and procedures, even in economically disadvantaged or developing nations. Most

medical and nursing training programs now include seminars and discussions about clients’

legally-protected rights to start, modify, or discontinue any intervention or service and the

ensuing duties of professionals to honour such decisions. Valid consent---which authorizes a

professional to act---is obtained when the person is informed about the particular

intervention’s benefits, risks, and burdens compared to other options, has the requisite

capacity to make this decision, and is not being pressured, coerced or manipulated to

decide.

These three components of the consent process can be obstructed or compromised by the

nature or symptoms of mental illnesses and addictions. First, being informed. Healthcare

workers frequently overlook this component when clients decline recommended treatments.

This is why the consent process is shared: if a treatment is declined, the reason may be that

personally irrelevant, non-meaningful, or unintelligible information has been

unintentionally provided. Timely disclosure and intelligible explanations are among

clinicians’ routine duties. As per the clinical section above, our understanding of the nature

and causes of mental health and addiction problems is relatively limited, though it is

increasing. Accurate diagnoses can take considerable time and prognoses may be quite

uncertain. Available therapies and treatments may be scientifically promising, but still lack

sufficient high quality research studies to be able to provide highly reliable and nuanced

details to patients. Consequently, clinicians can find it difficult to provide clients with

individualized and useful information about their illness, prognoses, and personally

beneficial treatments.

The second component of a valid consent process is having “enough” mental capacity to

decide. When clients decline treatments, this component can garner disproportionately more

attention from clinicians than the other two components. Governmental legislation often

stipulates specific criteria that, if not met, mean the person lacks the legally required abilities

to make his or her own health-related decisions. Two criteria often comprise legislated

standards: (1) is the person able to understand the information, and (2) is he able to

appreciate the consequences of having versus not having the intervention. These abilities

can be undermined by mental illness or addiction. But no set of assessment questions or

exercises qualifies yet as the validated set for accurate assessments. Consequently, different

clinicians may assess a person differently in terms of having or not having capacity for a

particular decision. Importantly, however, legislation and court rulings typically hold that

someone who has a mental health or addiction problem can still have the needed capacity to

consent to or decline a recommended therapy. In other words, depression, mania, paranoia,

or hallucinations do not, in and of themselves, void the needed abilities to make treatment

or other health-related decisions.

The third component is voluntary-ness. Certain therapies and care can involve social,

environmental, and bodily control (e.g., group counselling, behaviour modification,

protective devices). Coercion therefore is an ongoing possibility. Moreover, some mental

health problems can result in a lack of self-control (i.e., mania, dis-inhibition) or in

heightened fears (e.g., paranoid schizophrenia, having a history of trauma or abuse). This

means that the invasiveness, demanding-ness or restrictive-ness of certain treatments may

be very unwelcome, even though they can benefit the person in other ways. Furthermore,

Ethics Related to Mental Illnesses and Addictions

despite an appropriate substitute decision maker consenting to treatment on behalf of

someone lacking capacity, it will still be traumatic and damaging to the therapeutic alliance

whenever a treatment is administered against the person’s will (e.g., with Security staff

present, by forced injection, by forced application of a protective device to prevent self-

injury). Accordingly, before deciding whether an intervention fits with the person’s prior

expressed wishes and best interests, a substitute decision maker must understand not just

the type of treatment recommended, but also how it will be administered and what will be

the individual’s likely experience of “being treated.”

4.2 Rights and duties regarding privacy and confidentiality

Governmental legislation about the collection, use, and sharing of personally identifiable

health-related information is common today. These acts, statutes and regulations protect

citizens’ right to privacy regarding their health, minds, bodies, and related activities by

delineating professionals’ and organizations’ duties to keep such information as confidential

as possible and yet use it effectively and efficiently. To preserve clients’ and families’ trust,

limits to confidentiality and any legally required duties to report should be discussed as

early as possible by healthcare workers. Later in this chapter, stigma and discrimination will

be discussed in detail but suffice it to say that the need to protect mental health and

addictions related information is especially important. The consequences of a person’s

employer and insurer learning that he or she has or has had a mental health or addiction

problem can be significant and irreversible. This need to protect this information, however,

can unintentionally frustrate, even damage, professionals’ interactions and relationships

with patients’ families.

While many healthcare organizations include family-centeredness among their corporate

values, this is more complex in mental health and addictions settings because family may

have knowingly or more often, unknowingly, contributed to the person’s poor health. Too

often, family members emotionally, psychologically, and/or physically abuse one another.

Yet research and testimonials show that people recover and sustain a good quality of life

because of familial support. More strongly put, family support can be a protective factor

(Cleveland et al. 2010; Ivanova & Israel, 2006; Korol 2008; Piko & Kovacs, 2010). Negotiating

this quandary requires healthcare workers to have strong communication, interactive and

assessment skills. Clinicians and healthcare organizations must be proactive in instituting

practices to safeguard clients’ privacy and to balance the competing interests of clients and

their families without losing their trust or compromising their relationships further.

4.3 Rights and duties regarding safety

The political philosophy concept of parens patriae means that a legitimate government serves

much like a patriarchal parent or father to its citizens. It is thus responsible for their general

well-being and safety, and at times must make decisions that contravene their immediate

wishes. A citizen may be in danger of being harmed such that those formally delegated

powers to fulfill the government’s duty (i.e., such as police and medical professionals) are

expected to intervene on his behalf. So too if the citizen is harming or posing a serious threat

to another innocent citizen. Governmental representatives may act unilaterally to stop or

prevent such harm, especially if the potential victims may lack the abilities or resources to

protect themselves.

Bioethics in the 21st Century

Mental illnesses and addictions can result in serious risks to the individual: suicide, self-

neglect (e.g., poor hygiene), self-harm (e.g., cutting, pulling out hair, repetitive scratching).

Governmental powers to hospitalize, restrain, seclude, or treat against a person’s wishes,

when her behaviours are due to mental illness, are often legally set out in mental health

legislation. The same legislation will specify who is legally obligated to forcibly act against

the person’s wishes when other people could be harmed or at risk of harm by her due to the

mental health problem. If there is no actual or suspected mental health problem, then the

individual would be dealt with according to applicable civil or criminal laws. Questions

about the kind (physical only or psychological too?), the probability, the urgency or

imminence (within the next few days or longer?), the seriousness or significance (life-

threatening, disabling and/or dignity-threatening?) arise when such legislation is written or

revised. While mental health legislation in most jurisdictions agrees that governmental

intervention is warranted when death or serious physical harm is likely, there is

disagreement as to whether other harms should be unilaterally and forcibly prevented.

Similar questions arise in healthcare settings when healthcare workers, family members and

the police try to decide whether to invoke their government-delegated powers.

Governmental legislation should try to strike a balance between the safety of the individual

and others and the magnitude and duration of restrictions imposed upon the individual.

Which rights and freedoms enjoyed by other citizens will she lose and for how long? What

are the least invasive and limiting options? These questions probe whether the response to

her harmful behaviour focuses on maintaining safety or on punishing undesirable

behaviours.

4.4 Institutional mechanisms

Punishment is a worry for mental health facilities because their competing goals include

keeping individual clients safe and keeping others safe. There are four theories of

punishment: retributive theory, deterrence theory, rehabilitative theory, and restorative

theory. The last three of these theories happen to resonate with various clinical paradigms.

Such coherence can unintentionally link punishment with clinical interventions. It is crucial

for clinicians and teams to focus on the behaviours and decisions that relate to the health

problem for which the client is seeking therapeutic help. Interventions and accompanying

interactions must not be punitive.

A recent judicial trend is the creation of “mental health courts” and “drug treatment courts.”

Their objective is to divert those who have been found guilty of violating certain laws, albeit

as non-violent crimes, away from prisons and jails. The mitigating factor in this sentencing

is that these people broke a particular law because of a mental illness or addiction. The fact

that someone has a mental health or addiction problem does not mean that all his or her

actions and choices are determined by the problem. To qualify for “medical diversion,” the

law-breaking actions have to be the result of the health problem; for instance, the person’s

judgment was impaired because he or she was intoxicated or responding to paranoid

thoughts or to threatening internal voices. Accordingly, a judge decides whether the person

should be diverted to an appropriate health facility to receive treatment and care for the

mental health or addiction problem. Historically, judicial systems have provided no or

minimal mental health and addictions treatment because punishment and control were the

priorities and funding was inadequate. Focused, integrated, and sustained treatment in

hospitals’ programs is expected to help these individuals return to the community more

Ethics Related to Mental Illnesses and Addictions

quickly and not re-offend. Those who are directed to mental health and drug treatment

courts usually can choose to have their cases heard in “regular court” with the possibility

that if found guilty, jail, prison or probation is next. However it has been found that those

who agree to be diverted into the health system may be under its auspices longer than if

they had been in jail or prison. It can seem that diversion is harsher and thus less fair. This

harkens back to the lack of highly effective, of easily sustained therapies or of adequate

community services to justify a conditional discharge.

Therapeutic jurisprudence is a concept first coined by David Wexler, a professor of law and

psychology, in a 1987 NIH conference paper (Corvette, 2000). He held that judicial systems

and processes can be beneficial or harmful to those who break civil or criminal laws. Being

held responsible, treated fairly, assisted in exercising rights to a fair hearing as well as others

having duties to follow the impartial rule of law are considered to be psychologically and

existentially affirmative of the individual as an equal member of the community. Moreover,

the judicial system can help mediate injustices experienced in the public realm: “Therapeutic

jurisprudence is normative. It suggests that to the extent possible, consonant with due

process and justice values and goals, undesirable effects should be avoided or minimized

and positive effects should be maximized” (Ibid, 103). Therapeutic jurisprudence fits with

mental health courts and drug treatment courts to a degree. These court settings bring

together employees of two major societal endeavours: the judiciary and healthcare.

Nevertheless, caution is warranted. Various legal scholars and academics worry that these

employees’ roles will illegitimately merge such that role boundaries are crossed. In other

words, the judicial employees will weigh in too far---beyond their knowledge and training--

-into the work of the healthcare employees and vice versa (Dickie, 2008; Moore, 2007; Nolan,

2003). Furthermore, benefits vary between women and men. This, in turn, warrants

increased study as to different stakeholders’ views about the meaning as well as the effects

of these courts and their processes (Hunt et al., 2007; Moore, 2007; Shaffer et al., 2009).

Similar debates have arisen when legislatures have considered amending existing mental

health laws to include community treatment orders. These orders, often called involuntary

community treatment, are meant to organize a mixed set of supportive community services

so that a person can leave the hospital and live safely in the community as a less restrictive

option. If, however, the community providers and agencies do not fulfill their

responsibilities and it is possible that the person will become unsafe as a result, then he can

be forcibly re-hospitalized forthwith. At issue is how to ethically evaluate this option: solely

on probable consequences (e.g., fewer urgent hospitalizations, shorter hospitalizations)? At

present, not enough is known as to why community treatment orders are associated with

certain positive outcomes. Are they due to the ongoing availability of comprehensive

supports or is it due to the ever-present threat of the client being re-hospitalized against his

will? (Burns & Dawson, 2009; Hunt et al., 2005).

Mental health and addictions settings encounter another challenge in the guise of advance

directives. Advance directives have been discussed for years in the context of physical, acute

care medicine. Medical advance directives permit people to designate who will be their

healthcare decision proxy and/or to provide guidelines for subsequent decisions when they

no longer have the capacity to decide on their own behalf. Empirical evidence shows that

psychiatric advance directives, or “crisis cards” in the U.K., reduce the frequency and length

of emergency hospitalizations. They also increase clinician-client trust (Srebnik & Russo,

2008; Sutherby et al., 1999). Yet discussions about psychiatric advanced directives’

usefulness often ignore a critical detail: can directives be invoked before persons satisfy

Bioethics in the 21st Century

legislated criteria to be deemed incapable? Or can they be invoked only after they are

assessed as lacking capacity? The “after” scenario is not too ethically or legally controversial

because the directive actually constitutes client participation in the care plan and establishes

relevant “prior expressed wishes” (Bogdanoski, 2009; Srebnik et al., 2005; Swanson et al.,

2006). Dubbed “a Ulysses contract” after the Greek fable about Ulysses, the “before”

scenario is definitely controversial. If there are legislated standards and court rulings to

protect decision-making by capable citizens, then it could prove difficult, perhaps legally

impossible, for citizens to waive their right to such decisional protection.

5. Why organizational context matters ethically

In the early decades of bioethics inquiry, academic and professional scrutiny and debate

centred on the work of researchers using human subjects and “bedside” or “front line”

practitioners. The issue that expanded this focus to include administrators, management

and executives, and Board members was, I believe, the galloping costs of healthcare services

that were not adequately reimbursed by governmental and private insurance plans. In the

United States, Medicare’s and Medicaid’s decision in the 1980s to shift from reimbursing as

per diagnostic Related Diagnostic Groups and to capitated managed care costs confirmed

the immense impact of management on client-professional relationships. Moreover,

increasing annual deficits made the business of healthcare an issue for everyone, from

patients, practitioners, hospitals, commercial employers to governmental health ministers.

All economically developed nations now experience demand exceeding healthcare supply,

despite increasing budgets. Continued technological advances are typically more costly and

citizens’ confidence that “new” and “more” produces better health outcomes is often short-

lived.

An “organization” will herein be defined as a designated group of specially trained or

skilled people working towards a shared goal or purpose. As such, a rural adolescent drug

counselling office consisting of three addictions workers and an office administrator

constitutes an organization, as does each discrete unit within a psychiatric hospital, as does

the hospital as a whole. Organizational considerations are not the concern or responsibility

of only executive management; they are the responsibility of virtually all staff members.

5.1 Organizational factors

Organizational considerations in healthcare fall into four general categories, each of which

warrants a brief explanation as to its relevance for ethical practice in mental health and

addictions settings. One category is the ethics of the organization’s mission or mandate. The

purpose of an organization, irrespective of whether it has been formally and explicitly

described or it is implicit in its regular activities, establishes to whom the organization is

responsible and accountable and for what… and to whom it is not responsible. More simply

put, a mandate sets out the groups of people to whom the organization must respond with

“Yes, we can help you” and to whom it can respond legitimately with “You will have to

look elsewhere for assistance.” In contemporary healthcare, healthcare organizations have

often developed a set of values to guide how their mission and strategic goals are

accomplished. A point in this chapter’s introduction bears repeating here: some values are

intrinsically ethical (e.g., being trustworthy, relieving suffering). Other values may be

instrumentally ethical (i.e., financial stewardship so as to maximize number of clients

served).

Ethics Related to Mental Illnesses and Addictions

A second category is the ethics of how a healthcare organization is governed: what should

be the guiding operational standards and according to whom? Governance will be both

internal and external. Examples of external governance include accreditation standards,

employment and occupational health regulations, applicable government legislation,

funding regulations, professional Colleges’ codes of practice, and the organization’s Board

of Trustees/Directors. Examples of internal governance include negotiated labour contracts,

a code of employee conduct, quality-safety committee, any document that details patient

rights as well as the largest and most endemic “repository” of internal governance, written

policies and procedures.

Another general organizational ethics category for healthcare settings is the ethics of

resource acquisition, allocation, and disposal. Here, “resources” applies not just to money,

but also to staff, beds, counselling sessions, equipment, physical space, and professionals’

time. How resources are obtained is ethically important, as evidenced by debates about

seeking funds from pharmaceutical and gaming corporations or about recruiting nurses and

professionals from countries sorely lacking in qualified personnel. Allocation of resources,

as mentioned earlier, is the most well known organizational ethics issue in health care: how

to allocate resources fairly, even if there is just “soft” scarcity, is challenging and often is

informed only by an implicit utilitarian calculus. Prioritizing access to and provision of in-

patient or out-patient services occurs routinely and includes wide-ranging decisions such as

which medications to include or exclude from a hospital formulary, how to respond to “VIP

requests” for access, and how many times a hospitalized client or his substitute decision

maker can decline a community bed without consequence. Resource “disposal” first came to

attention vis-à-vis discussions about the environmental impact of what was being discarded

by tertiary, acute care hospitals. Yet closing or reducing services can mean staff layoffs and

reduced hours. Refreshing all computer hardware can mean deciding whether to donate the

replaced computers to a remote school or a community centre serving people living with

addictions problems. “Disposal” decisions involve ethics-related values such as who will be

harmed versus benefited, who should help identify alternatives and applicable rationales,

and who is responsible for making the final decision.

The last category is the ethics of an organization’s culture and climate. Understanding what

culture and climate are and their impact has been a favoured topic in business ethics and

business literature for some time. Culture is reflected in what is considered acceptable

versus unacceptable behaviour and interactions. It is so ingrained and presumed to be

“right” that it does not need to be written anywhere. Culture will include norms for how

hard staff should work, what counts as humour, what questions can and cannot be asked

out loud, and how much is decided by committees versus individuals. Climate is a

metaphoric word to capture the organization’s current mood: is it optimistic, such that

trying something new without administrative permission is a safe thing to do? Or is it

suspicious, such that “not rocking the boat” is well advised? Or is it celebratory such that

being a little less productive for awhile is acceptable?

In virtually all ethics related questions involving clients, organizational considerations will

implicitly or explicitly impact their treatment, care, and interactions with co-clients, staff,

family members, and outside parties. In some instances, staff responses will be ethically

weaker or stronger because of these considerations. Some everyday examples include

practices and policies about smoking restrictions, searching clients’ belongings, hospitalized

clients’ intimate and sexual behaviours, clients’ use of illegal substances during the therapy

period, staff responses when clients may be driving impaired, staff obligations or lack

Bioethics in the 21st Century

thereof if a pregnant client uses illegal substances, and so on. Policies and practices must

balance competing, often conflicting, interests and responsibilities. As noted by Winkler

(2005), depending on how policies are developed and implemented, they can minimize the

power and resource imbalances among staff as well as between clients and staff. Or they can

exacerbate them. As memorably explained in Skorpen et al.’s (2008) article about smoking

rooms in a psychiatric facility, clients can try to find ways to regain power and equal status.

On a separate but related point, safety initiatives will be ethically grounded. However,

safety can become the “sun” that blocks out all other considerations, or “a trump card” that

silences all other interests and voices. Depending on a healthcare facility’s culture and

climate, it may be politically unwise to suggest that safety measures are causing more

burdens and disadvantages than anticipated.

Busy clinics and hospitals may operate unintentionally in ways that traumatize or re-

traumatize clients. Many people who develop a mental health or addiction problem have

experienced serious trauma, be it physical, emotional, and/or psychological abuse. If a

medical office or health clinic’s practices are impersonal, coercive, or disrespectful, the

person may find them even more distressful and stressful because her past experiences of

being silenced, pressured, or shamed are remembered and reinforced. Moreover programs

and units may operate with such allegiance to “the rules” that professional judgement and

integrity fade. Having integrity requires some modicum of inner struggle, according to

scholar Stephen Carter (1996). In other words, having integrity is praiseworthy because it is

hard to achieve. Therefore if healthcare workers’ motives for acting as they do come from

“following the rules,” then they might be commended as being capable rule followers, but

this is divorced from being professional or having integrity. As noted in the introduction,

reasons for acting may not be based on ethics-related values, but instead on other

considerations such as self-interest, convenience, power, or fatigue.

5.2 Forensic programs and services

The ethical challenges and complexities of forensic healthcare programs and settings are

numerous and significant, as reflected throughout this chapter. In the case of forensic

services, care is needed to avoid unintentional “creep” of the police and prison system into

the therapeutic system. Language is an obvious marker of such ingress: clients or patients

have privileges that they can lose, regain, and exercise. Yet the word “privileges” evokes

imperialism and parentalism because privileges are granted by one party to another. If an

empowering or strengths-based approach is adopted instead, clinicians could refer to a

client’s “responsibilities” or “actions” as set out in the court or review board order. There

would be consequences, positive and negative, if she fulfills or does not fulfill her

responsibilities, rather than the moralizing or infant-alizing rhetoric of “consequences to

reward good behaviour.” To help balance the power relations more equitably, her clinical

team and the program management would also have various responsibilities to fulfill.

Another example is contraband, wherein clients are prohibited from having certain

qualifying items with them in the hospital. But “contraband” is a familiar police and drug

enforcement word related to smuggling. It does not belong in a healing environment (recall

that the person was diverted from the prison or jail system). Alternative wording could be

“unsafe items” or “prohibited items,” which are accurate descriptions but far less polarizing.

Ethics texts written for psychologists and psychiatrists usually include a chapter on ethically

defensible ways to formally assess a person for court such that the person does not

Ethics Related to Mental Illnesses and Addictions

mistakenly presume the clinician has her best interests in mind. As noted above, health

workers may struggle to maintain the appropriate balance between offering therapy and

following a court’s legitimate demands. It is essential for programs to proactively and

openly examine their routine practices. These forums will help support workers to deal with

the to-be-expected moral distress of meeting competing commitments (Austin, 2001; Morse,

2008; Pouncey & Lukens, 2010). Moreover understanding clients’ actual experiences of these

situations, rather than just working from assumptions, is important because the significant

power differential between clinician and client can progressively erode professional

commitments.

6. Why systemic factors matter ethically

Since moving from a large tertiary, acute care hospital to working at a large mental health

and addictions hospital, systemic factors have figured prominently in my ethical analyses

and recommendations. Like Sokol, I gradually became aware of these factors’ impact on the

daily lives of clients, families, and healthcare workers alike as I listened to more and more

personal stories: someone who can only afford substandard housing and worries bedbugs

will soon infiltrate their belongings, a recreational therapist frustrated that clients are not

welcome at a community gym, and rural parents whose employer-paid insurance plan caps

psychotherapy for their behaviourally aggressive child at ten sessions per year. Systemic

factors are implicit in a community or society’s ongoing activities that occur just outside the

walls of a private practice, clinic, or hospital. Three kinds of factors are particularly relevant

to defensibly determining normative responses or, in other words, “what should happen.”

Moreover these factors ground any health and healthcare decision in the reality of a

particular society or community. Sidestepping these factors in ethics-related analyses can

result in ineffective responses or assigning responsibilities disproportionately.

6.1 Stigma

The first ethically weighty factor is stigma. There are many definitions of stigma, but Jo

Phelan and Bruce Link (2001) offer a nuanced characterization. They suggest that it has four

components, which appropriately captures its complexity: (1) human differences are

identified and labelled, (2) these differences are linked to negative qualities, (3) those who

are different become “Them” as separate from “Us”, and (4) the person’s or group’s social

status declines and unfair discrimination occurs. Those who make up society’s majority,

captive to the seeming truth of “bell curve statistics,” commonly presume that what is

common constitutes what is “normal” and what is uncommon constitutes what is not just

rare, but also what is morally abnormal. As described by historical accounts of societies’

treatment of those whose thinking was unusual, this treatment has traditionally been fear-

based and repressive. Furthermore, if people’s thoughts were accompanied by behaviours

and appearances that violated social etiquette and norms, the collective responses included

dismissive marginalization, controlled quarantine, or forced treatment. Historically, mainly

charitable or faith-based institutions endeavoured to care for and about people with mental

illnesses until the past fifty years or so in North America and Europe. Yet stigma remains a

contemporary problem. For example, based on its 2006 Senate report on mental illnesses and

addictions and available services, Out of the Shadows at Last, Canada’s Mental Health

Commission launched “Opening Minds,” a ten-year anti-stigma/anti-discrimination

initiative.

Bioethics in the 21st Century

Social or communal stigmatization and discrimination----related to ethics concepts of de-

humanization and injustice----help explain why most people are initially reluctant to seek

psychiatric and psychological testing because of the enduring harms of being labelled as

having a mental health or addictions problem. Families, too, delay seeking information and

help from clinicians and programs, often relying primarily on the Internet’s anonymity and

non-judgemental-ness. Keeping health problems secret limits access as well as limits offers

of needed, physical, psychological, relational, educational, and economic support. Yet

stigma and discrimination go beyond the general public’s response to those living with a

mental health or addiction problem. Studies have also revealed that many mental health and

addictions workers unconsciously and consciously stigmatize and discriminate against their

own clients despite their day-to-day interactions with them (Flanagan et al., 2009; Liggins &

Hatcher, 2005; Ross, 2009; Schulze, 2007). There is also evidence that mental health and

addiction workers themselves are stigmatized by working in this field of healthcare

(Gouthro, 2010; Halter, 2008; Stuhlmiller, 2005).

Discrimination of individuals with mental health and addictions problems can be more

subtle, but can be just as unfair. It is important to examine whether double standards are

being presumed or relied upon. Clinicians and teams may want to restrict client activities

that would be permitted in general society. For example, a residential program may decide

to permit residents to engage in consensual, non-exploitative intimate behaviours in their

private rooms, but expect these behaviours to reflect “highly responsible” or “meaningful”

activity. Or the program may have a search policy that presumes residents to be more

dangerous and more devious than has been actually experienced. Media stories and

mainstream television and movie companies sensationalize rare disorders and behaviours

as well as behaviours that result in criminal charges or convictions. For instance, programs

and healthcare workers’ attention can be disproportionately directed to people’s use of

illegal drugs compared to their tobacco and alcohol use. Yet smoking and drinking alcohol

cause more death and serious co-morbidities than marijuana, or even heroin.

Language is slow to change, too. Someone in treatment for, say, cocaine addiction is said to

“test dirty” on a urine drug screen (Radcliffe & Stevens, 2008; Rose et al., 2005). Urine

screens for people with diabetes, however, are described as “testing positive” or “negative.”.

As “addicts,” “schizophrenics” or “sex offenders,” people are reduced to a particular illness

or behavioural category. There has been a move within the addictions field to talk about

substance dependence, misuse, and abuse… rather than always about addictions. Hofman et

al’s 2003 study of inner city women who were IV-drug users and used outreach health

services far less than male IV-drug users in the same area revealed the women’s ongoing

efforts to fulfill familial and communal responsibilities plus retain a sense of respectability.

The criticism of healthcare workers’ continued use of the demeaning and paternalistic terms

“compliance” and “non-compliance” is about stigma as well (Acosta et al., 2009; Bissella et

al., 2004; Proulx et al., 2007; Stewart & DeMarco, 2010). Because of stigma, discrimination,

negative side effects, and human nature, it should not surprise us that people do not follow

prescribed regimens at the high level of “compliance” needed. As noted by a systems and

client advocate, those receiving health services do not set a personal goal of “being more

compliant” with their treatment (Jennifer Chambers, 2010; personal communications).

Instead, they set more meaningful goals such as getting sustainable employment, feeling

well enough to help with a son’s homework, or having more faith in one’s hard-won

wisdom.

Ethics Related to Mental Illnesses and Addictions

6.2 Social determinants of health

Being healthy does not rely solely on physiology, genetics, and lifestyle choices. Social and

cultural factors also have significant impact (Lauder et al., 2007). While the World Health

Organization (2003) identifies several social determinants, three are of particular ethical

import for mental health and addictions contexts: housing, unemployment and poverty, and

social isolation. The percentage of people who are homeless and have a mental illness, while

difficult to accurately determine, is estimated to range from 20% to up to 50% in various

studies of Canadian, U.K. and American cities (Hwang, 2001; Meltzer, 2008; National

Coalition for the Homeless, 2009; Neale, 2008; Senate Standing Committee, 2006). The

relationship between unstable and inadequate housing and mental illness and addictions is

considered to be bi-directional. In other words, sub-standard housing contributes to onset or

relapse just as mental illness and addictions contribute to loss of adequate and reliable

housing. Reflective of continued discrimination, “NIMBY” or “not in my back yard” is a

common community response, opposing governmental or private agency housing initiatives

for people with persistent health concerns, such as mental illnesses and addictions.

People with mental health and addictions problems are at increased risk of living in poverty

(Canadian Mental Health Association, 2007; Hudson, 2005; Wilton, 2004). Schizophrenia, for

instance, usually manifests in late adolescence or young adulthood, which means

educational efforts are disrupted. Lack of post-secondary education usually results in being

less competitive in the job market. Stigma means that finding suitable employment is more

difficult---even though many countries have legislation prohibiting discrimination based on

health conditions---and once employed, people must often be diligent to keep their mental

health or addictions history secret. Governments may offer financial assistance to those

unable to work due to a physical or mental disability, but the amount of support typically

provides for a low standard of living.

Psychiatric hospitals were once known as “asylums” because they were considered safe

havens from the uncertainties and rigors of daily life. But too many became immense

institutions of sturdy walls and high fences in which people with mental health problems

lived out their lives separated from the community. Exclusion is anathema to human health

and well-being. Moreover, some mental illnesses, such as autism, paranoia, and personality

disorders, involve reduced abilities to understand or trust other people and this, in turn,

undermines relationship-building. Add public prejudice and the consequences for many

people with mental health problems are isolation and marginalization (Baum et al., 2010;

Elisha et al., 2006; Morgan et al., 2008 and 2007; Smith & Hirdes 2009).

6.3 Health and social systems writ large

The third systemic factor that is ethically noteworthy is our social and health systems. Three

issues help illustrate the tangible impact of these systems on the therapies available and the

recovery realized. First, ethically worrisome conflicts of interest can exist. When a

government sells alcohol and operates gambling venues (e.g., casinos, lotteries), this runs

counter to its public health mandate (Andresen, 2006; Livingstone & Adams, 2011; Walker &

Jackson; 2011). Even if a government only regulates commercial sales of these items and

activities, their coffers receive immense sums of money from luxury taxes on alcohol,

gambling, and cigarettes. As evidenced by the “Big Tobacco Settlement” in the United

States, only a few of the 48 states in the class action suit directed a substantial part of their

proportion of the $235 billion settlement to smoking prevention and treatment. The other

Bioethics in the 21st Century

states assigned their settlement portion to deficit reduction, infrastructure needs, and more

general uses (Johnson, 2004).

Another systemic issue is the historic and continued unfair insurance coverage or

reimbursement for non-physician and non-hospital therapies. For instance, Canadian

provincial and territorial governments’ health insurance plans tend to not reimburse

psychotherapies or alternative treatments provided by non-physicians in the community,

but do reimburse physician-provided/prescribed and/or hospital-based treatments. In most

cases, psychologist/therapist and psychological measures are either paid by employer

insurance plans or out-of-pocket (Parker & Burke, 2005). These plans usually cap their

coverage at low levels. In fact, the U.S. Congress passed the Mental Health Parity and

Addiction Equity Act in 2008 to help address this inequity by requiring federal health plans

to reimburse mental health services on par with medical health services.

Systemic considerations contribute to “revolving door situations,” which are usually and

unfairly identified as “revolving door patients.” These situations centre on health gains,

made by someone while receiving the intensive and publicly provided services in a hospital,

dissipating quickly once he returns to the community which may lack certain services, or

have insufficient services, or have services that are neither easily understood nor effective.

Continuity of care and comprehensiveness of services falter. As a result, he soon requires re-

hospitalization to receive more intensive and comprehensive therapies. Returning to home

may mean that the benefits prove unsustainable and re-hospitalization is likely. This

repetitive cycle is particularly concerning if the illness is such that it is not physiologically

possible to return fully to the pre-crisis levels of functioning. Health system reform and

social system reform appear on most countries’ election platforms, but reform is difficult to

achieve given the programs’ immense complexity and the perpetual expectation of

increased funding.

7. Conclusion

7.1 Cases revisited

How can these various recommendations and cautions deepen and refine our

understanding of the cases at the opening of this chapter and shift our responses from what

is minimally ethical to what is optimally ethical?

Case 1: First, the nurse should verify what the applicable legislation states in terms of which,

if any, healthcare professional is responsible for reporting what, to whom, and based on

what evidence. If the legislation does assign responsibility, is it to just a physician or to any

healthcare worker who has direct contact with a client? If to a physician only, is the nurse

legally expected to notify the physician? Is the responsibility framed as obligatory or

permissible? In terms of evidence, is it in the form of a professional assessment or a mere

belief or opinion? Answers to such questions should guide the nurse in terms of what she

says to the physician and what she and/or the physician say to Sergei.

Even if there is no applicable legislation, this remains a possible health concern that the

physician should broach supportively with him. Alcohol dependence rates are highest in

Russia, therefore it is more likely that he, too, has a substance use problem, or at the very

least, may be experiencing some personal challenges for which he is misusing alcohol to

cope. If the physician and/or nurse conclude they do have a legal duty to report, it remains

their decision as to whether they actually will contact the Ministry. They may decide instead

to talk first with Sergei, learn more about his drinking pattern and motivations, and inform

Ethics Related to Mental Illnesses and Addictions

him of their legal obligation to report. In so doing, they are weighing the likely

consequences to Sergei, his family members (who may be in the car when he is impaired),

and the general public. They may also believe openness and support will help preserve their

therapeutic relationship with him and increase the likelihood that if he is misusing alcohol,

he will pursue treatment and/or counselling. If the clinicians report Sergei to the Ministry

and the Ministry decides to revoke his licence, they should be willing to support---if they

have relevant corroborating information regarding his successful efforts to control the

medical condition that resulted in dangerous driving---a license re-application in the future.

Case 2: A team member should find out exactly what the Mental Health Act states. It is

careless and unprofessional to rely on unfounded assumptions and beliefs. The harmfulness

of sexually transmitted diseases (STDs) is subject to debate. For instance, some STDs are not

reportable under any provincial or state public health regulation, some are reportable only

in certain jurisdictions, and some STDs are reportable in every jurisdiction. Moreover, is

involuntary hospitalization the least restrictive preventive measure? The team may be

illegitimately presuming that Ana Li herself considers pregnancy or an STD something to

prevent. Paternalism needs to be tempered as do any moral judgments about “unwed

mothers,” “inadequate mothering,” or promiscuity. It is unclear whether Ana-Li lacks the

capacity to be making decisions about measures to reduce the likelihood of STDs,

pregnancy, or about engaging in sexual activity. Hypersexuality alone does not imply

incapacity. The team must share their concerns with Ana-Li and do so in a sensitive and

mature way. It should not be assumed that all team members are experienced and skilled

enough to talk about sexuality and intimacy.

If, however, she is found to lack the capacity to make decisions about such preventive

measures, the team should turn to her mother to make the related medical decisions. The

team will need to be more skilful in their discussions with Ana Li’s mother so that it will be

the client’s values that are respected. It is to be expected that parents and young adults will

differ about the meaning and risks of intimate activity and pregnancy. Admittedly single

parenthood tends to be difficult financially and otherwise, but this is often due to societal

constraints, rather than the individual’s apathy. Diligence is needed to not lapse into double

standards wherein most parents are given considerable latitude yet those with mental health

problems must reach a far higher standard. It would not be surprising if a team member

suggests early notification of a local child protection agency because of the possibility that

Ana-Li could become pregnant and unable to care for a child. However this is a “rush to

judgment” and may reflect prejudice and disrespect. Moreover, once the call to the agency is

made, it cannot be “unmade” and Ana-Li’s name may be recorded in its system indefinitely.

This could be stigmatizing and may negatively affect her in the future.

Case 3: The program clients’ health should improve and be sustained longer by having peer

workers’ support and advice and by having staff understand how their homes (or more

often, “housing”) contribute to or erode their well-being. Team members should benefit

professionally as well, because peer workers’ knowledge can help counter over-reliance on

the medical model and home visits help members identify and tailor services better to

clients’ circumstances and thus be more effective. But clinical considerations---which relate

to ethics because they are about meaningful benefits for those involved---do not exhaust this

case. A peer support worker can be a very special role: for instance, it may be designed such

that workers do not “do” therapy or provide treatment. Nor do they fill in for absent family

or friends, helping to occupy clients’ free time. Instead, peer support workers have their

Bioethics in the 21st Century

own expertise and ways to support clients in being as healthy as they wish. Team members

may unintentionally induce peer support workers to take on their work and thereby violate

role boundaries. Peer workers themselves may be attracted unconsciously to the seemingly

greater authority of the professionals, especially if the workers work side-by-side with the

clinic or hospital staff. These are organizational considerations.

Ethically, power, authority, and voice are involved here which means that client trust of the

team and workers is at stake, just as is the trust between the team and the workers. The

initiative about home visits is ethically complex because some clients may prefer to keep

their homes private, away from the team’s “medical gaze.” Other clients, however, may

appreciate home visits because of the convenience, plus it may help equalize the power in

their relationship with team members. Team members may not appreciate this implicit loss

of power. And if client lives in a risky area of town, team members may be reluctant to visit

alone, but program resources may be heavily strained if staff make home visits in pairs.

Nonetheless, equity of access to healthcare services demands proportional efforts (greater

efforts if access is harder) to reach those living in inhospitable areas due to poverty resulting

from having a serious mental illness or addiction, compared to efforts to reach those living

in safer areas. Neither initiative should be unilaterally imposed on clients, despite how

clinically sensible the initiatives seem. The director, managers, and leads should seek input

from a representative group of clients to ensure that both initiatives fit clients’ circumstances

and needs well. Furthermore, since the director is new to the program, he must act in

trustworthy ways in the hope that all his staff will genuinely commit to his overarching

vision, of which the two initiatives are representative.

Case 4: It may not be ethically sufficient for someone with good oratory skills to speak on

behalf of Jane. Given the historical treatment of individuals with mental health problems,

providing them opportunities to use their own “voice” can signal respect and a better

equalization of power. Moreover, the team should not assume that their therapeutic

relationship with Jane is more important than her relationship with the lawyer. Exercising

one’s legal options and participating in the judicial system are valuable citizenship rights.

The team may also be presuming incorrectly that the lawyer did not explain to Jane the

possible pros and cons of her testifying and how the Board would likely interpret her

remarks. Moreover, Jane may have decided that the benefits of speaking---to affirm her

courage to “stand before” those who will judge her case and to have them listen to her---

outweigh the possible risks. Team members may be ascribing to an erroneous stereotype

wherein Legal Aid lawyers are believed to be less skilled than Crown attorneys and

corporate lawyers. At the outset of Jane’s hospitalization, the team should have discussed

with her what their responsibilities are to her, to the Review Board, and to her lawyer, and

any competing, possibly conflicting, commitments. Leaving such conversations until just

before a Board hearing is inappropriate. The team should encourage Jane to see them and

her lawyer as available resources to her to help her return to the community, but refrain

from telling her what she should do to receive a conditional release.

Case 5: Is Omar revoking his consent when he says he does not want to go to the specialist?

If “yes” but the team ignores the revocation because debridement is “clearly in his best

interests” and his ulcers are debrided, this would constitute assault. What if the team

concludes that at the time he says he does not want to go, he lacks the capacity to decide

against debridement? Does his prior agreement when he had capacity still apply? This

situation illustrates the telling difference between consent to treatment---a decisional

Ethics Related to Mental Illnesses and Addictions

activity---and cooperation with treatment---a physical and behavioural activity. Trying to

take him to the specialist’s office may result in an escalating situation of angry words, raised

voices, threatening statements and then a “code” has to be called. This may damage the

therapeutic relationship such that when Omar regains capacity, he may decide that

returning to his home as quickly as possible is his best immediate option. Furthermore,

Omar’s refusal to go to the hospital may reflect many people’s common reluctance and

vacillation about seeing medical practitioners and therapists. Understanding clients’

statements and behaviours should not be reduced just to medical considerations (i.e., non-

compliance) or legal considerations (i.e., lacking capacity). Rather, it is crucial to see clients

first as everyday people with many similar habits, preferences, and interests as everyone

else. In other words, Omar’s wish to not go to the specialist may be the response of most

people who must go to big hospitals or have non-healing ulcers debrided. Those who are

not in a hospital would just phone the specialist’s office and ask for a later appointment. But

Omar is in the hospital. The clinical team are now involved and may be unknowingly

making it their care plan, rather than his care plan.

Case 6: Money can compromise organizational and personal integrity and reputation alike.

The representatives should generate a variety of ideas to cover the costs without sacrificing

the number who will attend or who can attend. The considerable profits of pharmaceutical

and alcohol businesses means they have ready resources to increase their name recognition

and brand loyalty. The agency representatives should find out what are the kinds of

restrictions or limits academic healthcare institutions---which have long worried about

conflicts of interest, unbalanced content, and reduced credibility---have instituted in terms

of financial support from commercial enterprises and use these as guidelines. Moreover, it is

worthwhile investigating whether the industries have set their own detailed guidelines for

donations. As illustrated by the Code of Ethical Practices of Canadian research-based

pharmaceutical companies (Rx&D, 2010), industries may want to avoid perceptions of

excess and undue influence in order to protect their corporate reputation. In terms of the

lottery, will it increase attendance enough to cover the spa’s cost? Can the lottery be

replaced by a draw wherein all registrants receive just one ticket? If the spa weekend is of

modest value, it is unlikely to lure those with gambling problems. And much time will pass

between registration and the draw, which means immediate gratification from winning, a

risk factor of problem gambling, is almost impossible.

Case 7: Keeping secrets is risky, whether the secret-holder is the person with the health

problem, a family member, or a clinician. In the short-term, the benefits of secrets may

outweigh harms. Nonetheless, it can become more and more difficult to keep them. The

harm of nondisclosure may increase as time passes. The “right time” to break the silence

about the secret may never appear, but Edward’s health problem is long-term. Moreover,

what explains his continued visits to the physician? And what explains the seeming

inconsistency between taking the renewed prescriptions and yet not having them filled?

Qualitative studies have revealed that people have sound reasons for what appears initially

to be noncompliance with the recommended treatment.

In terms of Sandra and her partner, they should not be expected to keep their home open to

Edward indefinitely. Women continue to fulfill most of the demands of family and home life

in most societies, a continued sign of societal discrimination. It is thus inappropriate for the

physician to presume that Sandra and her partner still want to or should have Edward

reside with them. To address this quandary ethically, the physician should let Sandra know

Bioethics in the 21st Century

that it is not, and was not, legally or ethically appropriate for him to take advantage of the

secret administration of the prescription medication. He can suggest that Sandra explain to

Edward what she has done and why and be supportive if she is worried that Edward will

react in a threatening or unsafe way. The physician should invite Edward to his office to

discuss what has happened, why and provide information and resources to help Edward

remain as healthy as he wishes. In the spirit of not abandoning his patient and since it is

possible that the physician-patient relationship will be broken, the physician should be

prepared to offer Edward the names of other clinicians with whom he can find therapeutic

support and access medical treatments.

7.2 Wrap-up

In summary, people and their communities are complex. Problems with our cognitive and

emotional abilities have profound effects. Understanding and defining human cognition and

emotions and their interconnections continues to evolve in psychiatry, psychology,

neurology, and neuroscience. Moreover, recent research and clinical advances in neurology

and neuroscience have led to the emergence of neuroethics, the newest field within bioethics

and one focused on the human brain and nervous system. In a sense, science and what is

traditionally known as the medical complex have - rightly or wrongly - not yet assumed in

relation to mental health and addictions the authoritative position they have in physical

medicine and acute care settings.

Foundational ethical commitments and values remain relevant: for instance, the person’s

own wisdom and perspective, the community’s obligations to all its members, the duties

and limits of the state’s intervention in individual and familial lives, a holistic view of

factors contributing to individual and group well-being, and the immense, lasting harms of

discrimination and stigma. Therefore, ethical understanding, engagement, and assistance for

people’s mental health and addiction problems, requires in-depth and broad analyses,

multi-faceted and integrated responses, “the long view” and abiding commitment, non-

replication of past power imbalances and moralization, and a defensible role or place for

law and legislation.

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Resource Allocation

in Health Care

Giovanni Putoto and Renzo Pegoraro

Padova Teaching Hospital and Fondazione Lanza

Italy

1. Introduction

In many European countries where reforms of the welfare system are underway, reference

is often made to the need to ‘rationalise’ the provision of health care. This term is

generally used to refer to the need to organise healthcare effectively by reducing waste,

containing costs, and ensuring that budgets are adhered to. Actions taken to achieve this

are varied: some relate to the provision of services (for example, concentrating the

provision of goods and services, redistributing health care workers); others require

redefinition of the level of service provision (for example, avoiding hospital admission for

conditions that can be treated in the clinic, or in day care); others rely on the application of

the tools provided by evidence based medicine and evidence based healthcare to define the

most effective medical care and interventions (for example, eliminating those procedures

whose effectiveness is not supported by firm scientific evidence). All this is aimed at

making healthcare provision more efficient and effective. Nevertheless, despite the efforts

being made in this direction, it is becoming evident that rationalisation of healthcare

provision is not sufficient in itself. The ageing population, the development of new and

expensive technologies, the emergence of new diseases such as AIDS, Bovine Spongiform

Encephalopathy (BSE), Severe Acute Respiratory Syndrome (SARS), and above all the

rising expectations of healthcare users, are all leading to an unsustainable tension between

demand and healthcare resources available.

Because it is not possible to provide everything to everyone, even by putting unacceptable

pressure on present finances and by threatening provision for future generations, and

since it is arguably socially unacceptable to leave the provision of healthcare to the free

market, it is inevitable that certain choices be made. This implies a process of ‘rationing’,

rather than ‘rationalisation’, that can be defined as ‘the distribution of resources between

programmes and persons in competition’. In the process of rationing, a series of crucial

questions must be posed: What treatments or healthcare services should be provided to

citizens? How should these services be distributed between members of a society amidst

budgetary constraints? Who decides? How? On the basis of which criteria? The problem

of rationing (also referred to as ‘priority setting’, or ‘resource allocation’) in healthcare is

therefore a problem of the moral legitimacy of such choices; this chapter illustrates this.

As challenges of rationing are not expected to change in the foreseeable future, at least not

in principle, we will address future and present rationing challenges in health care

similarly.

Bioethics in the 21st Century

2. From implicit to explicit rationing

Traditionally, the many resource allocation decisions in healthcare were made in a non-

explicit manner. Healthcare budgets were allocated to local authorities on a historical

basis and doctors were given the task of deciding priorities for the provision of services.

Today, increasingly, the choices made by politicians and professional healthcare

managers must consider general and specific criteria in planning within budgetary

constraints, and they are subject to scrutiny from a general public that is increasingly

determined to see proper provision of healthcare in return for their taxes. But it is doctors

that are seeing the greatest changes. The old pact that implicitly gave them the task of

distributing healthcare resources according to their professional judgement is gone. In the

medical world there is now an explicit requirement to account for the treatment choices

made, and there are mechanisms for checking disparities in the provision of diagnostic

and therapeutic services. These choices were once seen as strictly a matter of professional

autonomy. A further change that is indicating a move to a more explicit form of rationing

is the change in the once paternalistic doctor-patient relationship. A better educated

population with easy access to healthcare information, that is increasingly aware of the

need to become involved in decisions that concern their own body and health, and their

associated rights to healthcare, is pushing to question doctors’ decision making and to

demand explanations of choices made to include or exclude certain conditions from

healthcare provision. There are many cases of explicit rationing that are emerging in

different European countries: one of the most widely discussed of these was the

case of Child B in the United Kingdom, who was denied experimental therapy for

leukaemia on the basis that it was prohibitively expensive and of unproven efficacy (Ham,

1999).

In general, there is some agreement that rationing should be more open and explicit, thus

increasing accountability and the credibility of decision making. Despite this, a number of

arguments have been posed against this, particularly that it may lead to instability in the

health system and/or may cause harm to patients and the public. Others suggest that

rationing is about decision making and should be considered a political process that is

experimental and incremental.

3. Levels of rationing: macro, meso and micro

Healthcare rationing is a pervasive process that takes place at all levels and assumes various

forms. Choices concern priorities, so that the rationing taking place at different levels of the

public service through a hierarchy from high to low often constrains spending at the lower

level. There are at least five levels at which choices are made:

- the level of funding to be allocated to health services

- the distribution of the budget between geographical area and services

- the allocation of resources to particular forms of treatment

- the choice of which patients should receive access to treatment

- decisions on how much to spend on individual patients

For convenience it is common to refer to three levels. The first (‘macro’) is the national or

regional level, where the healthcare budget is decided. At this stage, decisions are made

regarding increases in contributions, reductions in spending, or financing of particular

programmes. Macro-decisions at a national level represent the key constraint within which

Resource Allocation in Health Care

further divisions of funds between regions and local health providers are made according to

formulae that vary from country to country.

The second (‘meso’) is the local level (regional or hospital), where resources are allocated to

different functions and local authorities make decisions about local priorities. Such choices

may involve the priorities attached to, for example, treatment services versus preventative

medicine; particular patient groups, for example those with renal failure versus drug

addicts; or certain hospital services, for example cancer services, versus other services such

as respiratory care.

The third (‘micro’) level is the care level, where healthcare professionals make decisions

about who, how, when, where and how to care for patients. This is a question of

professional prerogative that can be limited by constraints from above, but never

eliminated.

4. Decision makers and problems in reaching consensus: Who decides?

In societies where health services are funded and supplied principally via the state, cost

increases and budgetary constraints impose difficult choices that influence the services that

can be provided, the patients served and the circumstances of healthcare. The notion that

public opinion can influence the decision making process has gained momentum. Taking

note of public opinion obliges doctors, managers and politicians to take account of the

concerns of the population, supports the formulation of objectives according to need, and

favours social cohesion as well as civil identity. Many claim that without the agreement of

the public, choices about rationing should never be effected, as they lack legitimacy. It is

important to remember that public opinion about what services should be provided

frequently differs from the opinions of doctors and healthcare managers. It is also important

to note that in some jurisdictions, healthcare professionals other than doctors/physicians

have a strong say in this matter.

Considering the tendency of healthcare providers to be sometimes unresponsive to the

needs of society and inward looking, this develpoment of public involvment is to be

considered a positive step. In a democratic society it is no longer acceptable to make

decisions in the name of and on behalf of others without those others being informed and

consulted. It is a matter of what we now call ‘citizen rights’. Nevertheless, involving the

public in decision making is a complex process, both in principle and in relation to the

instruments that are used to gather public opinion. It is worth considering these limitations

in order to mitigate their effects (Mossialos & King 1999):

- The public, in general, is not in possession of enough information to make decisions.

Unless certain information is supplied regarding the effectiveness, risks, costs, and

quality of life implications of interventions, along with the options for alternative

treatments, decision makers cannot fully understand the problem

- There is a lack of familiarity with the debate on rationing, which would permit the

public to be capable of assessing the questions presented

- The effect of bias in public opinion caused by emotional responses generated by a

media that prefers sensationalist reporting to accurate presentaion of facts should not

be underestimated, as shown by the Di Bella case in Italy (Benelli 2003).

- It is important to encourage the public to think in terms of public interest as a whole, for

the common good over and above the good of individuals

Bioethics in the 21st Century

- Even public representation, when it exists, can present its own problems. The inclusion

or exclusion of certain groups or individuals can influence the range of attitudes and

values expressed. One approach is to involve service users, another is to solicit general

public opinion, or the opinion of institutional representatives. In the US state of Oregon,

for example, groups of disabled persons rejected the first list of proposed funded

treatments; they argued that the quality of life of disabled persons was undervalued by

the Commission addressing their matter.

- It is also necessary to consider the level at which choices are made (Litvaa et al. 2002).

At the system and program levels, informants generally tend to favour consultation,

without taking responsibility for decisions, but with the guarantee that their

contribution would be heard and that decisions taken following consultation would be

explained. At the patient level, it may be that the public should participate only by

setting criteria for deciding between potential beneficiaries of treatment, leaving the

final say to the doctors and the patients involved (and other healthcare professionals

and family involved).

- There are many methods that can be used to solicit public opinion. These include

surveys, in-depth interviews, public meetings, community forums, focus groups and

citizens’ juries. This list is not exhaustive, but reflects a range of options available. Pros

and cons in terms of time, costs, depth and breadth of analysis, discussion and

deliberations should be taken into account.

- Regardless of the method used, the value of public participation in priority setting is

largely dependent on the importance placed, by decision-makers, on the results of

public consultation.

The participation of the public in setting priorities is key for legitimacy. It is an educational

process that has to be encouraged and sustained. Public debate should be based on relevant

information and accurate communication, be open and transparent with all stakeholders,

and should make use of appropriate tools.

5. Methods of rationing

Methods of rationing that can be applied are many. In general they are classified as follows:

- Selection: Using this method, recipients of care are selected on the basis of clinical

benefit they will obtain, or the amount of time required to treat them.

- Denial: This method involves the exclusion of certain patient populations because

they are deemed unworthy, or because their needs are not seen as sufficiently

important.

- Deflection: This involves referring patients to other institutions. It is a form of rationing

when a patient’s needs can be met by other health or social services.

- Deterrence: This involves deterring patients from accessing healthcare by the imposition

of complex logistical/administrative requirements, such as inconvenient opening times,

incomprehensible paperwork, and unhelpful staff. This type of rationing tends to

disadvantage less educated and more vulnerable people.

- Delay: This method includes the use of waiting lists. It is the most recognised form of

implicit rationing in healthcare, and discourages patients from accessing health

services.

- Dilution: In this situation access to services is not denied, but the provision of services is

reduced, such as the frequency of home visits.

Resource Allocation in Health Care

- Interruption: This is the premature termination of a service or a treatment based on a

maximum time limit for a given treatment, such as premature discharge from hospital

or case closure.

Overall, these mechanisms of rationing are used by various decision makers, although only

the first (selection) is formally endorsed. Often rationing is not deliberate or conscious, but is

a means for professionals to cope with budgetary or other pressures. An alternative is the

development of guidelines as a medium/long term solution.

6. Technical and distributive approaches to rationing

To make choices or establish priorities, certain criteria are required that reflect the most

prevalent values in society. All countries that have embarked on this have stated the values

on which they have based their choices. There are, in general, diverse principles that can

guide a society’s choices. These can be classified into technical criteria or distributive

criteria. The first refer to the ‘technical’ qualities that services must possess in order to be

included, such as efficiency, efficacy, and appropriateness. The others criteria are

‘distributive’ in nature, in that they help establish an order of priorities in the choice

between different patient groups, such as relative benefit, and the rule of rescue.

7. Technical criteria

These are a prerequisite for any selection of priorities. For example, it is well established and

accepted that healthcare interventions should be effective, efficient and appropriate. Such

considerations can help in making choices, in as much as they help exclude those

interventions that do not meet these criteria, but they are not enough in themselves to

establish how many and which interventions to provide, and to whom.

 Effectiveness

The principle of effectiveness affirms that priority must be given only to those

interventions that produce positive medical results. It is a principle that is intuitive and

attractive in itself. The difficulties arise when one has to apply it and face up to the

implications of this principle. According to some studies, the majority of surgical and

medical procedures in use today are not based on scientific evidence of their effectiveness

(85% according to the US Office of Technology Assessment). The scientific method for

evaluating the effectiveness of healthcare treatments is based on the use of clinical

research, and has as its gold standard the randomised controlled trial, the most rigorous

assessment instrument, (hence real life circumstances) although it addressed efficacy

rather than effectiveness. Despite the recent development of evidence based medicine and

evidence based health care approaches and more refined instruments such as meta analysis,

the criterion of effectiveness is not without its limitations. Above all, the collection and

analysis of data about interventions is often expensive and may lead to ambiguous

conclusions. Sometimes clinical research is not conducted with the required rigour, and

frequently a treatment that may not be of general effectiveness may be appropriate in

particular circumstances. To eliminate all procedures not demonstrated to be effective

would therefore be unwise: even those treatments that are not scientifically well

corroborated may sometimes be helpful.

 Efficiency

Bioethics in the 21st Century

Efficiency is an economic concept. There are at least three types of efficiency that have been

identified: technical, productive, and allocative.

Technical efficiency compares the resources required for a healthcare intervention (input) with

the health benefits obtained (output). The relation must be as high as possible: maximum

output compared with input, or minimal input compared with output. An example of

technical efficiency is that of using 10mg of alendronate rather than 20mg of it in the treatment

of osteoporosis since studies showed that the smaller dose achieved the same clinical results

(assuming use of the smaller dose is less costly than use of the larger dose).

Productive efficiency is related to the possibility of choosing between two or more alternative

treatments in relation to costs and results. Consider, for example, a policy of changing from

maternal age screening to biochemical screening for Down's syndrome. The concept of

productive efficiency refers to the maximisation of health outcome for a given cost, or the

minimisation of cost for a given outcome. If the sum of the costs of the new biochemical

screening program is smaller than or the same as the maternal age programme and

outcomes are equal or better, then the biochemical program is productively efficient in

relation to the maternal age program. In healthcare, productive efficiency enables

assessment of the relative value for money of interventions with directly comparable

outcomes.

Allocative efficiency refers to the destination of resources, which society makes available to

various alternative uses, and defines as optimal the allocation that improves the health

situation of an individual without compromising that of another.

The promise of the principle of efficiency, in its three forms, as a guide for defining

choices, is attractive from an ethical point of view because it promises to deliver a greater

volume of healthcare services at the same cost, and to make choices less painful. But

problems emerge when applying this principle, in deciding the optimal allocation of

scarce resources within a society. Economic theory in general has led to the development

of various methods of evaluating the costs and benefits associated with different

healthcare interventions, in particular analysis of cost/efficacy, cost/utility and

cost/benefit. Criticisms of this approach lie not so much in the evaluation of costs, as in

the notion of benefit and the consequences on health and above all, in distribution. In the

cost/efficacy analysis, the results of a healthcare intervention are measured using

indicators specific to the intervention or the disease treated (for example, reduction in

infection rates, or rates of five year survival) and therefore do not allow a comparison

between different illnesses, but only amongst alternative treatments for the same disorder

(for example, medication compared to a surgical alternative). In cost/utility analysis this

limitation has been overcome, to a certain extent, by the use of complex formulae such as

QALYs (quality-adjusted life years) and DALYs (disability-adjusted life years), which

tend to better reflect not only the cost of an intervention, but the quantity and quality of

years of life productive/independent and functioning gained. This allows a comparison

between different interventions for different illnesses and allows the creation of a ‘league

table’ of interventions, based on these criteria. Evaluating cost/benefit can also include a

monetary evaluation of the health gain, even an evaluation of the economic value of the

extra years gained.

The limitations of these techniques are that from a technical point of view they are

expensive, complex and difficult to carry out, and from an ethical point of view they mask

Resource Allocation in Health Care

serious value judgements beneath their seeming neutrality. The fact that scarce resources

may be used to favour certain social groups to the exclusion of others solely on the basis of

economic criteria causes much ethical and social concern.

 Appropriateness

According to traditional classifications of treatments, an appropriate treatment is one where

the expected benefits exceed the expected negative effects (risks) associated with the

treatment. One can distinguish between clinical and organisational appropriateness.

Clinical appropriateness – a treatment that is not effective cannot be appropriate, but a

treatment that has been scientifically corroborated may still be inappropriate if carried out

on a patient whose condition does not indicate its use in their particular circumstances.

For some years the question of the appropriate use of interventions has been the subject of

health service research, addressing the variation of the use of services. In the Unites States

it is estimated that certain medical procedures (including coronary angiography,

endoscopy, coronary artery by-pass surgery, and hysterectomy) have a rate of

inappropriate use that ranges from 15-30%.

Organisational appropriateness refers to the type of service provision (inpatient ward, day

unit, clinic) appropriate to the intervention offered in terms of patient safety and the most

economic use of resources. With the introduction of such payment methods as diagnostic

related groups (DRGs), the assessment of organisational appropriateness includes a review

(known as a ‘utilisation review’) of clinical paperwork to evaluate the medical necessity of

the treatment provided, the means of providing that treatment, and its duration. In this way

the intervention and the appropriate timescale for such an intervention can be evaluated,

and inappropriately long care identified.

8. Distributive criteria

Distributive criteria are a set of principles that establish an order of priority in the allocation

of healthcare resources. They do not address the question of what must be guaranteed to

individuals and society at large, but attempt to establish who (which individual, which

social group) can have access to such resources.

 Need

In almost all methods of resource rationing there is an underlying principle of equality or

justice, in which resources must be allocated according to need. A key element of justice

requires that individuals with the same needs should receive the same treatment and that

greater need takes priority over lesser need. The principle of equality requires that those

with the greatest needs should have the greatest claim on resources. But how does one

evaluate which need is greater than another? By whose evaluation: the doctor or the patient?

Needs may be evaluated in terms of the consequences or results of interventions. A just

society would have the moral obligation to provide for the needs of each citizen for

treatment, but not for mere desires. Doctor and patient preferences may not coincide when,

for example, decisions about quality versus quantity of life have to be made. Even if the

concept of need is crucial, it remains ill defined and elastic. To what extent a society can

satisfy needs is closely related to the resources available. Science can help in classifying

needs on the basis of their consequences, independently of consideration of costs. The

relation between needs and resources is, however, a political choice.

 Merit/demerit

According to the notion of merit, priority must go to those who deserve special

consideration. For example, older people may deserve more attention as they have

Bioethics in the 21st Century

worked and paid their taxes for longer than anyone. Or children, because they have not

yet had the chance to realise their human potential. Demerit is when judgments are made

about lifestyle in relation to certain risk factors that may justify the restriction of the

provision of health services. For example, heavy smokers, drug users and alcoholics may

be deemed unworthy of receiving certain healthcare interventions unless they change

their high-risk behaviour. The notion of merit/demerit is controversial if not

unacceptable, as it contradicts the enlightenment tenet of the brotherhood (or more

generally, siblinghood) of humanity.

 Risk

The concept of risk is similar to that of need and refers to the deterioration of a situation that

could occur in the absence of an action or intervention. While the concept of need measures

the deficit in well-being of an individual, that of risk evaluates the consequences of a non-

intervention. The service providers possess the necessary information as to the relative

grades of risk.

 Benefit

The communitarian sense of the principle of benefit is based on the discussion of collective

good and the use of common resources. It is not the individual characteristics of need or risk

that count have, but the final result for the community as a whole. Priority must be given to

those who can gain the maximum benefit from an intervention (the ‘capacity to benefit’).

The underlying principle is that scarce resources must be used in such a way as to maximise

the benefit not to the individual, but to the collective whole. According to this principle, it is

immoral not to consider the costs associated with intervention, as this would mean ignoring

sacrifices imposed on others.

 The rule of rescue

The duty to intervene when a life is in imminent danger cannot be avoided. According to

this principle priority must be given to people in an emergency situation, or whose life is in

danger. In healthcare, as in other sectors, the application of this principle is considered a

fundamental indicator of our degree of civilisation. In fact, more importance is attached to

the act of assisting than to the outcome of the intervention; this creates a practical difficulty,

because it offers no assistance as to when to cease such interventions if the patient does not

die. To apply the rule of rescue in all cases of need would lead to an unsustainably

expensive system.

9. Theories of justice in healthcare

The technical criteria and particularly the distributive criteria that we have so far

considered represent attempts to find some shared rational bases with which to deal with

the problem of resource allocation in the health sphere. Apart from their apparent

neutrality, they require a more or less explicit assumption of values. This in turn requires

the consideration of theories of distributive justice, three in particular: individual liberty,

utilitarianism and egalitarianism. These theories have profoundly different visions of the

world, but are all inspired by two considerations that to a certain extent bind them

together:

- Justice, while relevant to the individual conscience, is not restricted to the discretion of

the individual, but represents the necessities of human coexistence

- Justice Relates to at least one of the following concepts: equality, liberty, responsibility,

equity.

Resource Allocation in Health Care

We will now examine different justice positions in more detail, both from a general point of

view and in relation to the healthcare sphere.

The theory of individual liberty

This philosophical approach attaches the utmost importance to individual liberty rights. As

a consequence, the state is required to support individual autonomy, both through rights

that promote the notion and through promotion of a market economy. The market is left the

task of redistributing resources in order to guarantee a level of dignified life for all,

supporting individual expectations. The state becomes a discreet bystander in society where

individual liberties take precedence, affording the fullest possible autonomy. For these

reasons, in a ‘pure’ liberal state, there is no ‘formal imperative’ to support social solidarity.

By definition the state is not obliged to tackle inequalities or to take on the task of supplying

social services such as healthcare or education. In the healthcare sphere the results are as

follows:

- There is no automatic ‘right’ to health for subjects

- The state is not morally obliged to provide any mechanism for the protection of health

- Health care is provided by means of a private contract between patient and healthcare

provider; the patient pays for the service and the doctor/patient relationship reflects this

- The quality and amount of healthcare received is dependent on the ability of the patient

to pay.

Utilitarian theory

The difficulties in the individual liberty theory lead to recourse to utilitarianism (or, more

generally, consequentialism), where individual liberty rights are subordinated to the

requirements to maximise utility, that is the state of ‘maximum happiness and minimal

misery’, or ‘the greatest happiness to the greatest number’. By definition, each action is

judged on the basis of the amount of utility it generates: the objective is the best possible

outcome for the largest amount of people for the minimum cost in terms of loss of utility.

Utilitarianism thus inverts the relationship between individual and society, favouring the

second. The state, in pursuing the goal of social utility, will favour the good of many over

the individual.

The provision of a public healthcare system is in keeping with the theory as a whole, bearing

in mind that the objective is the promotion of utility in terms of best possible health status

for the maximum number of people. From a societal perspective, treating many patients

who suffer from various conditions is viewed as equivalent to saving a few whose lives are

in danger.

The theory of egalitarianism

The egalitarian model includes a multiplicity of positions, sometimes philosophically and

politically far removed from each other. It brings together forms of socialism, social contract

theory, and communitarianism. Egalitarianism attaches maximum importance to the

equality of fundamental rights (to life, liberty, work, culture, and more) and to the

conditions that support and protect these rights. Collective and societal needs take

precedence over individual need in their theory, where upon public bodies have a pre-

eminent role in their duty to protect and support the needy. This is the antithesis of

individual libertarianism, as here a cooperative society is obliged to tackle inequality in all

its forms:

Bioethics in the 21st Century

‘Social and economic inequality must satisfy two conditions: firstly, they must be attached to offices

and positions open to all under conditions of fair equality of opportunity; secondly, such inequalities

are justified only if they benefit the worst off’ (Rawls 1999)

Egalitarian healthcare is based on the ‘right to health’ – protection and promotion of

physical and mental integrity, healthcare and quality of life and of the environment are

seen as positive rights. The state must take on the protection and promotion of these

rights, through provision of universally accessible healthcare on the principle of

solidarity.

10. The conflicts and limits of philosophical approaches

Theories of justice and their implications for the organisation of healthcare and the problems

of rationing lend themselves to a series of considerations that illustrate both the strengths

and weaknesses of such approaches.

Theories of individual liberty have the advantage of guaranteeing maximum individual

freedom, but the price paid is high, particularly for those unable to participate fully in the

marketplace and those whose individual autonomy is weakened (the poor, the elderly, the

disabled, and others). Not only that, but the market imperative, far from promoting the

well-being of many, rewards selfishness and highlights economic inequalities.

Furthermore, freedom without responsibility is incomplete, the material and moral life

ruled by laws of supply and demand, with the only aim being the attainment of

individual freedom.

Utilitarianism has the advantage of subordinating individual advantages to the well being

of the many, the key objective being to maximise collective utility. The theory is not

without its criticisms, however. One of these is that in maximising utility to the collective

whole, there is potential to ignore the needs of the individual. There are also difficulties in

defining utility, given that this is a subjective term (as wanted in quality of life

assessments). The values involved, the burdens of expensive treatment and the clinical

benefit derived for the patient are incommensurable (not capable of being compared with

each other) unless there is a similar treatment alternative to use as comparator. Where

there is no alternative, the application of a utilitarian evaluation often creates more

problems than it resolves.

Egalitarianism seeks maximum social justice and protection of rights, but this theory also

incurs criticisms. First, what is the foundation of this equality? Based on the social

mechanism we want to refer to, social rights may be embedded in a more or less solid

foundation. In the case of the social contract, rights are normally attributed to members of

society or, by the same vein, are drawn from them. Yet social rights could also be attributed,

regardless of a social agreement, as fundamental human entitlements that cannot be

questioned, for example by the majority rule. Secondly, there is a risk that social dynamics

could prevail over the individual, forcing the latter to accept priorities and objectives that

are opposed to his or her own rights.

To conclude this part, when referring to rationing in health care, it can be argued that in

pluralistic societies there are continuous tensions and confrontations about what distributive

justice is about and how it can be guaranteed to citizens. An agreement based on the

philosophical approaches outlined above is likely to be unachievable, thus it is necessary to

explore other solutions to the problem of rationing of health care resources.

Resource Allocation in Health Care

11. The ethico-procedural approach

Normative approaches are important as they help identify fundamental values that are at

the core of political decision making, but they are not enough in themselves, as we saw

that different theories lead to different conclusions and there is no consensus on which is

the correct approach to take. Added to that is the fact that they are too abstract to be

applied as such to the reality of the world of healthcare institutions. Empirical approaches

are sometimes helpful, because they help identify what has been done and what could be

done, but not what should be done. In the absence of a broad consensus on the

acceptability of various guiding principles for the allocation of resources, the problem of

‘fair’ distribution becomes a question of ‘procedural justice’. An ethico-procedural

approach requires a decision making process that allows agreement on what is legitimate

and fair in terms of rationing. Rather than concentrating on principles and values that

should underpin decision making, the ethico-procedural approach asks how such

decisions are made. It involves a shifting of perspective from content to process. The

rationale on which the ethico-procedural approach is based is as follows: irrespective of

the financing or provision of health services, legitimate authority is conferred by the

influence of the democratic process on the system. A well known ethico-procedural

approach is ‘accountability for reasonableness’ (Daniel & Sabin 2002). The conditions

essential to the application of this approach are as follows:

1. Publicity condition: decisions regarding both direct and indirect limits to care and their

rationales must be publicly accessible.

2. Relevance condition: the rationales must rest on evidence, reasons, and principles that all

fair minded parties (managers, clinicians, patients, and consumers in general) can agree

are relevant to deciding how to meet the diverse needs of a covered population under

necessary resource constraints.

3. Appeals condition: there is a mechanism for challenge and dispute resolution regarding

limit setting decisions, including the opportunity for revising decisions in light of

further evidence or arguments.

4. Enforcement condition: there is either voluntary or public regulation of the process to

ensure that the first three conditions are met.

The advantages of this approach are many. For instance, there is an educational aspect. All

parties to the decision can appreciate the value of debate and deliberation in achieving a fair

decision under resource constraints. Furthermore, ‘accountability for reasonableness’ occupies

a middle ground between implicit rationing and explicit rationing. In a similar fashion to the

implicit approach, the principles on which the decision is made do not have to be disclosed

in advance; in contrast, as in the explicit approach, there is an appeal to greater transparency

in disclosing the reasons for decisions on rationing resources.

12. International experiences

At the international level, there are three basic strategies for rationing that have emerged.

The first (and until now the only example of its kind) is that employed by Oregon (USA),

which tackled two issues together: which treatments, and how much treatment, should

the state provide to its citizens whilst acting within its budgetary restraints? It is the most

explicit and radical form of rationing to date. A second strategy is that of the Netherlands

and Sweden, which defined a set of principles on which to base a healthcare package of

Bioethics in the 21st Century

available treatments for eligible citizens (the Netherlands), or to define priorities in the

supply of healthcare (Sweden). Neither country has managed to produce a list of available

treatments. A third strategy is that adopted by New Zealand and Great Britain, who are

not so much concerned with general principles as with putting into place a continual

process of drawing up guidelines and advice on appropriate treatment, supporting their

view that rationing should take place at the local and individual (micro) level.

Oregon

The US state of Oregon was the first to explicitly and fundamentally address problems of

rationing in healthcare. Following the death from leukaemia of a child who was denied a

transplant, the authorities set up a commission in 1989, the Health Services Commission, to

make recommendations on how the government funded Medicaid program could be

extended to include a section of the population who were not covered, and how to set

priorities within the Medicaid program itself. Having unsuccessfully tried an exclusively

technical approach (cost effectiveness analysis), they turned to a method that paired disease

with treatments and ordered these according to the gravity of the disease. Adjustments were

made to the list, according to what the Commission viewed as ‘reasonable’ and taking into

account the results of a public consultation. The ‘Oregon Plan’ was put into practice in 1994,

financing 565 treatments of the 696 listed. This list has since been amended and changes

were made to the originally identified priorities. The abandonment of the technical

approach, debated furiously by the medical profession and the public alike, has become a

symbol and a learning opportunity for many countries faced with difficult choices in

rationing.

The Netherlands

The Dutch government set up a Government Committee on Choices in Healthcare in 1990,

with the mandate remit of examining the problem of choices in healthcare and identifying

criteria for drawing up a basic package of healthcare treatments that should be offered to all

citizens with the necessary state or private health insurance. In their report, delivered in

1991, the Committee adopted a broad approach, with a method for evaluating the necessity

and availability of treatments, using four criteria/filters:

- Necessity

- Efficacy

- Efficiency

- Individual responsibility

The report also dealt with issues such as technological developments, waiting lists, the

appropriateness of treatment, and public involvement in priority setting. The Committee,

however, did not chose to produce a list of treatments for inclusion in the basic package,

but limited itself to applying the principles to a few controversial cases (in-vitro

fertilisation, homeopathic medicine, dental care for adults, sports injury services, care of

the elderly).

Sweden

The Swedish Parliamentary Priorities Commission was set up in 1992 to ‘discuss the role

of health services in its social context and to outline the fundamental ethical principles

that should guide the necessary prioritisation of resources’. An interim report entitled ‘No

Easy Choices’ was published in 1993 and circulated for comment. The Commission

Resource Allocation in Health Care

identified two types of approache to the problem of priority setting: a clinical approach

based on patient need, and a politico-administrative approach where scarce resources

needed to be considered. An interesting feature of the Swedish deliberations was the

development of an ethical platform based on certain principles to guide choices about

priorities:

- The human dignity principle

- The principle of need and solidarity

- The cost/efficiency principle

The final report did not contain a detailed list of services to be included or excluded, but it

did group treatments into five classes of descending priority. This approach is a method for

assisting in establishing priorities and helping those responsible to make decisions.

New Zealand

In 1992 a National Advisory Committee on Core Health Services was set up in New

Zealand to ‘make explicit which services everyone should have access to, in acceptable

terms and without unreasonable waiting times’. The practical difficulties in drawing up a

definitive list led the Committee to identify as essential those services already provided,

because these were deemed to be so as the ‘result of many years of reasonable good sense,

decisions founded on principle’. The Committee to developed guidelines for services of

general application, those with high costs, or those that are delivered in high volume. The

guidelines are shared at conferences, and efforts to involve the public in the debate are

notable.

Great Britain

In Great Britain there has been no national committee set up to address the problem of priority

setting in healthcare. The task is delegated at a local level, and local authorities must determine

an annual plan of services they wish to provide. Some have been more explicit in recent years

about which services they will provide, albeit thus far restricting access to marginal treatments

such as tattoo removal. At a national level there is an agency that evaluates treatments and

develops guidelines – the National Institute for Health and Clinical Excellence – and another

that looks at service performance – the Health Care Commission.

Developing countries

Developing countries who have limited resources more than developed countries, are

obliged to make difficult choices in terms of healthcare provision and who to provide it

to. A specific example is the provision of antiretroviral treatment for AIDS sufferers in

Africa. Scarce resources, even when accounting for international help, do not permit

universal access to these drugs: choices have to be made. Governments can make such

choices on the basis of financial, socio-economic or medical criteria. As an alternative, or

in conjunction, they may be allocated on the basis of less formal, unfair criteria such as

individual preferences of decision makers, or political considerations (Rosen 2005).

Developing countries are advised by the World Bank to direct resources to public health

programs on the basis of economic and cost efficiency considerations, using tools such as

the Disability Adjusted Life Years tool (World Bank 1993). In any case, the

same considerations need to be taken into account: who decides? On the basis of which

criteria? On what values are decisions based? How democratic is the decision making

process?

Bioethics in the 21st Century

12. Conclusion

International experiences serve to highlight yet again just how difficult the issue of rationing

in healthcare is. Every country we have considered has found its own way to set priorities.

There is no consensus on principles, or on the methodologies used to make choices. General

principles, when they have to be applied in a practical way at a local or individual level,

have to be interpreted in light of circumstances and there is an ever-present ambiguity in

this application. It is not possible to predict all the situations in which the rules will have to

be applied, so a certain level of discretion and interpretation is required. All this confirms

that there are no easy solutions at hand (Holm 1998).

Coulter and Ham (2001) summarized international experience with health care priority

setting, and concluded:

‘there is a need to strengthen institutional processes in which decisions are taken; priority

setting processes must be transparent and accountable; clinical guidelines are increasingly being

used as a priority setting tool, but fair processes are needed for guidelines, just as for priority

setting more generally; the politics of rationing favours muddling through and the evasion of

responsibility, but this is unsustainable in an era of increasing public awareness about policy

making; priority setting policy making is an exercise in policy learning; and “accountability for

reasonableness” is a leading ethical framework for priority setting in institutions’.

Accordingly, a strategy for improving priority setting in health care entails improving

priority setting processes using guidance such as that provided by the “accountability for

reasonableness” approach. Without analysis and debate about public policy, people and

institutions can make arbitrary decisions about access to treatment, and implicit rationing

can foster both inequity and inefficiency.

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Bioethics in the 21st Century

Martin D.K., Pater J.L., Singer P.A. (2001) “Priority setting decisions for new cancer drugs: a

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6736.

Ethics and Medically Assisted Procreation:

Reconsidering the Procreative Relationship

Laurent Ravez

Associate Professor at the University of Namur,

Director of the Interdisciplinary Center on Law, Ethics and Health Sciences

Belgium

1. Introduction

Since the birth of Louise Brown, the first ‘test-tube baby’ in the history of humanity, in July

1978, criticisms of MAP have not ceased. These criticisms are generally of two types. The

first relates to the medico-technical dimension of MAP and questions the effectiveness and

the safety of these biotechnologies. The second, which I will discuss here, relates to the

ethical dimension of MAP.

I will initially review the ethical criticisms of MAP, particularly in the Francophone

literature (although this is not significantly different in the Anglophone literature), and

suggest a way of classifying them, before going on to show the limits of such a classification.

These criticisms can be grouped into three categories: the medicalization of procreation, the

upheaval in the structures of filiation, and the status of the embryo. We will see that,

although this criticism is enlightening in certain cases, it is often excessive and, at the same

time, overlooks the effectiveness of procreation technologies in relieving the suffering of

sterile couples, as argued in previous work of mine (Ravez, 2006).

The suffering of the patients is an essential element in the ethical evaluation of MAP, but it

is not sufficient to construct a satisfactory axiological framework. I will show that such a

framework is essential. I will propose three components of such a framework, taking into

account the limits of criticism addressed at MAP, but also the limits of MAP itself.

2. The “medicalization” of procreation

The “medicalization” of procreation, of which some accuse MAP, is demonstrated through

two professional attitudes:

1. Formulation of the desire for a child as a need to be satisfied immediately,

2. Construal of sterility as pathology.

By “formulation of the desire for a child…”, I mean a deep misunderstanding of the

complexity which drives two human beings to join together and from which sometimes a

child emerges as a symbol of this union. For those who denounce this misunderstanding, it

is particularly limiting to imagine that the human desire for a child is only or mostly

biological, while trying to resolve possible mechanical failures that may have lead to this

sterility. To illustrate this, I quote Genevieve Delaisi de Parseval who wrote: “It is in the

mind that children are conceived”(Delaise de Parseval & Verdier, 1985, p.20).

Bioethics in the 21st Century

Viewed as a need, the child, when it is desired, must be obtained as fast as possible and

under the best possible conditions. Desire is formulated as a need everyone has the right to

have fulfilled. In this view, sterility constitutes an obstacle to the need to have a child, which

reproductive medicine has the duty to alleviate. Many authors that are critical of MAP argue

that “pathologizing” sterility is likely to eliminate the psychological suffering which is

sometimes the origin of this desire. It may be better to listen initially to what couples with

procreative difficulties are trying to say, before launching into a series of biomedical

procedures. In other words, sterility should be considered as a call to listen to the

relationship rather than or only as a call to medical techniques and procedures.

3. Upheaval in the social structures of filiation

MAP is also regularly accused in the Francophone literature of upsetting the traditional

structures of filiation, thus threatening to destroy the foundation of the human family.

Artificial insemination by sperm donor (AID) makes it possible to dissociate biological

procreation and social filiation (Mehl, 1999). With this dissociation, the social father is no

longer necessarily the biological father of the children carried by his partner. Socially

speaking, this situation is not new. Adoption or adultery may also produce such situations.

But the novelty is found in the involvement of science, specifically biotechnologies, in this

dissociation.

The development of in vitro fertilization (IVF) with donor gametes (ovules and/or

spermatozoa) has reinforced the difference between these two modes; biological procreation

and social filiation. It has been suggested that you can make a child today by rallying

different people to the cause and without anyone of them having sexual relations with

anyone else (Malherbe, 1997). You only need the collaboration of: one genetic father, who

provides the spermatozoa, one genetic mother for the ovules, one surrogate mother providing

her uterus, one adoptive mother who will become the socially recognized mother of the child,

one surrogate father, companion of the surrogate mother, and one adoptive father who will

become the legal father.

Given such dissociation of the elements of procreation, there is fear that the very basis of our

life as a society will be undermined. We have an amalgam of ideas concerning paternity,

situated somewhere between bloodlines, i.e., the parent of a child is the source of the

biological conception, and the will–, i.e., the parent of a child is the source of the desire for,

and the choice of, a child. Behind these problems, we find a question present in social

anthropology: does one become a father through conception or filiation? In all human

societies, as regards filiation, there may be a primacy of the social over the biological. The

anthropologist Francoise Héritier states: “To sum up, there has never been a human society

up to the present that is based solely on the biological sense of filiation, or that would give a

purely biological relationship the same weight as the social sense of filiation” ( Héritier,

1996, p.258) . Actually, one could advance the idea that, in the view of social anthropology,

not only has the cleavage between social filiation and biological filiation existed everywhere

and always, but that this cleavage makes it possible to mitigate a situation of sterility, which

is often badly accepted socially.

4. The status of the embryo

As for the status of the embryo, there are many controversies about it. Opinion n°18

(September 16, 2002) of the Consultative Committee of Bioethics of Belgium (CCB)

Ethics and Medically Assisted Procreation: Reconsidering the Procreative Relationship

regarding research on human embryos in vitro notes the difficulty of agreeing on the moral

status of the embryo. It highlights five possibilities.

The first possibility is “intentionalist” or “externalist” and is defended by those who state

that the moral status of the embryo depends on the intentions of its (biological) parents.

According to this approach, the human embryo cannot be regarded as a person in its own

right unless it is part of a project of parenthood. Such a project is absent in the case of

supernumerary embryos or embryos created for experimental purposes. The second

possibility is to respect the embryo as a person as soon as the ovule has been fertilized;

this position is described as “internalist” or “creationist”. A third possibility offers moral

status to the embryo starting on the 15th day of development. The fourth possibility

corresponds to the oppinions defended in 1984 and 1986 by the National Consultative

Ethics Committee for Health and Life Sciences (CCNE) in France, according to which the

embryo is a potential person, i.e., it is not an actual person, but it has the potential to

become one and must be respected for this potentiality. The last possibility is known as

“gradualist”, in the sense that the human embryo has variable moral status according to

its degree of development: a 39 week foetus will have to be respected and protected more

than a 10 weeks old embryo.

The question of the moral status of the embryo is of paramount importance, because the

MAP techniques require the sacrifice of many embryos to carry out experiments. If we

regard the embryo as a person from the very first stages of its development, it is clear that

these experiments should cease.

Mehl writes: “In the end, scientists characterize the humanity of an embryo, not on an

essential definition, but rather by what they want to do with it. Paradox: in the past, science

tested the embryo to know what it could do with it. And now, it gives the embryo a status in

function of what it wants to do with it – authorize abortion, do research… So, the status of

the embryo by scientists seems fundamentally opportunistic” (Mehl, 1999, p.90-1). This

accusation of “opportunism” seems to structure the paper: “The Random Embryo”

[L’embryon aléatoire] (Hermitte, 1990). Her criticisms remind us of the moral principle: the

end does not justify the means. Applied to our subject, this principle could mean: whatever

‘benefits’ MAP may bring to couples, it is at the unjustifiable expense of some embryos. On

the other hand, those embryos may not exist from the start without MAP.

5. Suffering denied

Such criticisms help us recognize the weaknesses or even the dangers involved in the new

MAP techniques. Nevertheless, whatever the relative merits of such criticisms, they lack

insight into the suffering of sterile couples and into the effectiveness of new MAP

techniques to relieve this suffering.

Many clinicians note the suffering of sterile couples that want a child. The symptoms of this

distress are reminiscent of those of clinical depression. Muriel Flis-Trèves, a psychiatrist

who worked in the team of Prof Frydman (‘father’ of the first French ‘test-tube baby’), writes

on this subject: “The suffering which accompanies the diagnosis [of sterility] is intense. It is

often followed by a sudden withdrawal from the interests of daily existence, including

work, leisure, and even temporarily from sexual activities”. For men, Luc Roegiers notes

that the principal elements of this depression relate to “self doubt, his sexual prowess, his

capacity to transmit his genome” (Roegiers, 1994, p.169).

Bioethics in the 21st Century

Confronted with this suffering, MAP can bring relief to the suffering couple, quite simply by

providing the long awaited child. Positive testimony from couples helped by MAP is much

more difficult to find than complaints when the treatment fails. After the pregnancy has

finally started, couples often forget the particular circumstances which ushered in their

dearest wish. Muriel Flis-Trèves writes: “As soon as she becomes pregnant, the woman who

had recourse to MAP aspires to become a mother like any other. Her pregnancy is now

‘banal’ and she is confronted with the same anxieties, joys and hopes as all other women”

(Flis- Trèves, 1998, p.191). Béatrice Koeppel, a psychologist specializing in sterility has the

same position: “The first or second year after the birth of Amandine, the pregnancies with

IVF [in-vitro fertilization] seemed still extraordinary. This is not at all any longer the case.

On the contrary, the pregnancy is seen as banal. And it is what people appreciate with MAP:

to be like any future mother, to complain about restrictions, to consult books avidly, to be no

different from their peers” (Koeppel, 2000, p. 167-168). Soon after the pregnancy is

underway, even the idea of sterility becomes unbearable to many couples helped by MAP,

which makes discussion of their (former) sterility very difficult.

6. A “blank cheque” for MAP?

If the suffering of the sterile couples constitutes an essential element of the case for MAP,

it is still not reasonable to give the medical staff a “blank cheque”. It is important not to

lose sight of the fact that this kind of treatment is extremely dependant on technical and

scientific advances, in particular on biotechnologies. As Jacques Ellul – French sociologist

who had a great influence on the Francophone philosophy of technology - states, techno

scientific development is mainly guided by what we could call “technical imperatives” or

“the technician’s imperative”, which can be summarized as: “Anything that is possible

technically, should be done” (Ellul, 1954, pg, 122). The technology in itself is not unethical,

but is in fact outside of ethics, that is to say ethically undetermined as to the question of

its development.

Without ethical limits, MAP runs the risk of exacerbating the very problem it is trying to

resolve: the suffering of sterile couples. We have to acknowledge the successes of MAP;

we must also consider its failures and the suffering it may cause. This is suffering that the

authors who criticize MAP denounce, that is to say the suffering of couples for whom

MAP failed to offer the baby desired and for whom distress was increased further with

the procedure. On this point, G. Delaisi de Parseval writes: “[…] medical procedures

regarding infertility […] almost always produce sexual dysfunctions: taking of

temperatures, scheduled or forbidden sexual intercourse, analysis, exams, invasive

treatments that interfere with sexual desire or the achievement of intercourse, anxiety

induced by medicalization, […] sometimes compromise the balanced relationship within

the couple” (Delaisi de Parseval, 1985, p. 61).

On the one hand, we must recognize the effectiveness of MAP in fighting the plague of

sterility. On the other, we must avoid an approach which would justify the use of any and

all bio-technologies as regards human procreation, under the pretext of possible therapeutic

benefits. It is clear, however, that such an effort at clarity can only be effective given an

ethical framework, which is acceptable for both experts and patients, as well as for policy

makers. Today, MAP is integrated in the medical scene and I don’t intend to call into

question its provision, as do numerous authors. But, while accepting the principle of MAP,

Ethics and Medically Assisted Procreation: Reconsidering the Procreative Relationship

it is important to optimize its provision, not only on a technical level but also on an ethical

level.

7. Rethinking the procreation relationship and outlining a new axiological

framework

It would seem worthwhile to look further at the following framework:

1. Listen to those suffering from sterility, without necessarily endorsing everything they say;

2. Respect the complexity of the gift of life;

3. Consider technical and scientific advances not as an end in themselves, but as a means

to serve the couple’s desire for a child (keeping resource constraints in mind).

8. Listening to those suffering from sterility, without necessarily endorsing

everything they say

The challenge here is to encourage the parties involved in the area of reproductive medicine to

take the suffering and the stress related to sterility seriously, while leaving open the question

of whether or not this suffering is the cause or the consequences of this sterility. We find an

illustration of this position in the words of M. Bydlowski, one of the experts on the psychology

of infertility in France: “Years of work of consultation on infertility have confronted us with

the suffering of patients. […] Their distress is the consequence of their infertility. However, it

appeared to us that this suffering often exists before the symptomatic demand: the infertility

would then be the testimony of that suffering” (Bydlowski, 2000a, p. 119). If the infertility is

the result of mental distress, any benefit which MAP might cause may not eliminate the

existential malaise; this would need to be heard and explored before or unrelated to launching

a parenting project. Experts should find and use the means to differentiate among the requests

for a child which they receive, to identify what are calls for help from women or couples for

whom MAP is a band-aid for a wounded existence. Imagine a request for help, directed to a

doctor, to have a child, from a patient who in fact desperately seeks psychological healing, a

healing that may not occur even when a child might finally be born.

To illustrate this point, I turn to E. Jéronymidès, a therapist accompanying women with

procreative difficulties. She relates the case of a consultation with a woman looking for

medical assistance for secondary sterility. After two sessions, the patient, who had a very

difficult relationship with her husband, disappeared from care for several years. The therapist

later met her by chance. “Four years later, I bumped into her. She remembered me and seemed

happy to speak to me. She told me that she now had a two month old little boy. She had him

naturally, without MAP. She did not plan it, did not program it in any way. Then she recalled

that she had not contacted the hospital or MAP programme at the time, because her father had

fallen seriously ill. He had ended up being hospitalised and he died of cancer. ‘That’s the

reason’, she told me, ‘that I didn’t return to see you any more. I had a lot of difficulty accepting

the death’, she told me in a very serious tone, ‘I haven’t gotten over it yet and I’m not sure I

ever will. It’s very difficult losing your father. I was really very attached to him’. She said that

she doesn’t breast feed her child because she has a lot of work and that she has to leave her

house everyday. The tone she uses about the birth of the baby is neutral, with a hint of

bitterness. It’s as though the arrival of the child, and his presence with her could not, despite

everything, fill the place of the loss of her father” (Jéronymidès, 2001, p. 54).

Bioethics in the 21st Century

In other words, the suffering expressed at the fertility clinic can mask existential difficulties

– discord within the couple, difficulties with their parents, an unhappy childhood

(Bydlowski, 2000, Ravez, 2006) – that MAP, as such, has no way of detecting or resolving,

simply because MAP is a technology designed to treat biological dysfunctions. In that

context, the risk is high that professionals will assist the couple with techniques they

actually don’t want. An interdisciplinary approach at the MAP clinic, using a team of

doctors, nurses, psychologists, social workers and others can reduce this risk.

9. Respecting the complexity of the gift of life

To give life, whether it comes “naturally” or with the assistance of medical science, does not

only involve an efficient mobilization of gametes, a physiological process or a properly

functioning organism. The family context, the psychological aspects and the genealogy are

essential and must not be set aside. These elements are determining factors for a healthy

parental relationship. Bydlowski wrote: “The human child will result from the unique

mixture of the biological programming specific to the species - nucleic acids, molecules, cells

– with the pre-existent parental psyche – the secret desires, dreams, memories, and words”

(Bydlowsi, 2000b, p.24). Life presents a genetic or a biological dimension, but is also given to

the child in the midst of lived complexity, emotional and generational relations created by

their parents. MAP often undermines this complexity, as Brigitte-Fanny Cohen, a famous

French journalist who engaged herself in a MAP procedure, states: “My feeling, at least, is

that for […] agents of MAP, gynaecologists and biologists, I was just a womb and ovaries, at

best, a rate of FSH, a number of follicles or oocytes” (Cohen, 2001, p.67).

In the same manner, MAP can sometimes ignore important stakeholders such as husbands

or other partners and grandparents, due to the desire for a child. Husbands may not be

considered as agents in their own right in the procreative project, and are sometimes treated

as simple carriers of gametes. As the gynaecologist Pierre Fonty wrote provocatively: “These

men have the impression of being reduced to the rank of a sperm machine that produces on

demand, and to no longer being seen as beings animated by the desire for their partner,

having their own desires and sexual instincts” (Fonty, 2003, p. 100).

However, the situation is gradually changing, as certain practitioners of MAP seem to be

more aware lately of the non-biological importance of the father considerations are now

more often invoked. Delaisi de Parseval speaks about the “father who became a father

because of his own father’s regard of him; in short a father who lives through the experience

of paternity that is paradoxically, not very different from that of maternity” (Delaisi de

Parseval, 2003, p.110). Thus clearly “to be a father implies referring to their own role as a

son” (Clerget, 2003, p. 121). Paternity and fatherhood include both inheritance and

transmission.

10. Considering technical and scientific advances not as an end in

themselves, but as a means to serve the couple’s desire for a child (keeping

resource constraints in mind)

Contrary to some critiques of MAP, MAP offers increasingly effective ways for sterile

couples to have the desired child. But public health education is needed in relation to

Ethics and Medically Assisted Procreation: Reconsidering the Procreative Relationship

MAP. The methods and techniques of MAP need to be seen as ways of helping couples

have children and not as the cure for distress and angst in modern life. MAP does not

offer happiness, but does create the technical conditions to allow the couple’s happiness

to be expressed through and with the birth of a child. In other words, we can’t expect

MAP to offer love, a sense of balance, or harmony within the couple. Quite the contrary, if

the couple is fragile, the difficulties of MAP are likely to worsen the situation further.

To address this, an on-going dialogue should occur between the couple and the MAP

team.

11. Conclusion

I have argued here that criticisms of MAP ignore the fact that MAP may relieve the suffering

of sterile couples. However, I have argued that this does not constitute a sufficient reason to

give an ethical “blank cheque” to MAP, because MAP is a technology, and as such requires

ethical discernment. Three ethical suggestions were made here: listen to those suffering

from sterility, without necessarily endorsing everything they say; respect the complexity of

the gift of life; and consider technical and scientific advances not as an end, but as a means

to serve the couple’s desire for a child (keeping resource constraints in mind). More ethical

discussion of MAP is required.

12. References

Bydlowski, M. (2000a).La dette de vie. Itinéraire psychanalytique de la maternité. Paris: PUF,

ISBN-10: 2130503535, ISBN-13: 978-2130503538, Paris.

Bydlowski, M. (2000b).Je rêve un enfant. L’expérience intérieure de la maternité. Paris: Odile

Jacob, ISBN-10: 2738123996, ISBN-13: 978-2738123992, Paris.

Clerget, J. (2003). "L'home devenant pere", in Le pere, l'homme et le masculin en perinatalite. ed. P.

Marciano P (Rarnonville Saint-Agne: Eres, 2003), ISBN 2-7492-0126-8.

Cohen, B.H. (2001).Un bébé mais pas à tout prix. Les dessous de la médecine de la reproduction.

Paris: J.-C. Lattès, ISBN-10: 2290326682, ISBN-13: 978-2290326688.

Delaisi de Parseval, G & P. Verdier. (1994). Enfant de personne. Paris: Odile Jacob, France.

Delaisi de Parseval, G. (2003). "Les PMA ou 'Paternites medicalement assistees", in Le pere,

l'homrne et le masculin en perinatalite. ed. P. Marciano P Ramonville Saint-Agne: Eres,

ISBN 9782749201269.

Ellul, J. (1954).La Technique ou L’Enjeu du siècle. Paris: Armand Colin, 1954, Paris: Économica,

1990.

Flis-Trèves, M. (1998). Elles veulent un enfant. Paris: Albin Michel, ISBN 2226105441.

Fonty, B., & Hoguenin, J. (2003). Les pères n’ont rien à faire dans les maternités . Paris: Editions

générales First, ISBN 2-87691-747-5, France.

Héritier, F. (1996). Masculin-Féminin. La pensée de la différence . Paris: Odile Jacob, 1996, ISBN

2-7381-1605-1, Paris.

Hermitte, M.H. (1990). “L’embryon aléatoire”, in Le magasin des enfants, ed. J. Testart (Paris:

François Bourin, 1990), 238-265.

Jéronymidès, E. (2001). Elles aussi deviendront mères. Des femmes qui se sentent stériles. Paris:

Payot et Rivages, ISBN 2228893498 978 2228893497, France.

Bioethics in the 21st Century

Koeppel, B. (2000). La vie qui revient. Dans un service de fécondation in vitro. Ed. Calmann-Lévy

(10 mai 2000), ISBN-10: 2702131204, ISBN-13: 978-2702131206, France.

Malherbe,J.F. (1997). Pour une éthique de la medicine. Namur: Artel-Fides, ISBN 287374040X

9782873740405, Montreal, Canada.

Mehl, D. (1999). Naitre? : La controverse bioéthique . Paris: Bayard, 1999, ISBN 2227137738,

ISBN 9782227137738.

Ravez, L. (2006).Les amours auscultées: une nouvelle éthique pour l’assistance médicale à la

procreation. Paris: Les Ed. du Cerf, ISBN 2204079731 ISBN 9782204079730.

Roegiers, L. (2000). Les cigognes en crise (Bruxelles: De Boeck Université, 1994), ISBN 10:

2804119238, ISBN 13: 9782804119232 .4

Stem Cells: Ethical and Religious Issues

Farzaneh Zahedi-Anaraki and Bagher Larijani

Endocrinology and Metabolism Research Centre, Medical Ethics and History of Medicine

Research Centre, Tehran University of Medical Sciences

Iran

1. Introduction

Stem cells are capable of generating various tissue cells which can be used for therapeutic

approaches to debilitating and incurable disease. Even though many applications of stem

cells are under investigation, such research has raised high hopes and promises along with

warnings and ethical and religious questions in different societies. Generally, there is little

concern about using non-human or adult stem cells. However, embryonic stem cell research

has been confronted with questions from medical professionals, the public, religious groups,

and national and international organizations. The debate is partly related to "personhood"

and the notion of human dignity. Sources of stem cells, the moral status of human embryo,

the slippery slope toward commercialisation of human life, concerns about safety, germ line

intervention and the challenge of proportionality are some ethical issues.

Stem cell research is a promising but controversial issue on which many religions have

taken strong positions. The point at which human life begins is a pivotal challenge.

Conception, primitive streak development, implantation, ensoulment and birth are specific

stages in which different groups claim dignity begins in the course of human development.

In this chapter, we will review the history and scientific facts of stem cells in brief; then,

ethical considerations will be discussed. Our other aim is to clarify the religious debate on

the issue, particularly monotheistic perspectives. Some related international and national

guidelines will be reviewed in brief.

2. Definitions

In vivo (normal reproduction) or in vitro fertilization (IVF) of ova (female germ cells) and

spermatozoa (male germ cells) forms zygotes which contain the total genetic materials, one

half from the male DNA and one half from the female DNA. In favourable condition, the

zygote divides and forms the blastomere (8 cells), and then the blastocyst (120-150 cells)

around day five. Blastocysts consist of stem cells. At this stage, division of a blastocyst may

produce two or more normal human embryos. During the third week of human

development, the primitive streak, which is the primitive central nervous system, appears. At

this stage, the embryo is a unique entity which is no longer twinnable. Some scientists

consider this point as the moment when human life begins as such (Balint, 2001).

Stem cells in blastocysts are capable of differentiating along each of the germ layers of the

ectoderm (skin, nerves, brain), the mesoderm (bone, muscle), and the endoderm (lungs,

digestive system) (Hyun, 2008). After this stage of human foetus development, stem cells

Bioethics in the 21st Century

can be also found in different tissues but their capability is limited. For instance, as Lewis

(2009) stated, while mesenchymal stem cells are able to produce bone, cartilage, and muscle,

bone marrow stem cells can give rise only to white blood cells. The following part sheds

more light on the issue.

3. Stem cells: The facts and promises

Stem cells are undifferentiated cells with the capacity of renewal which can be used for

regeneration of body cells and tissues. Many potential therapeutic benefits are defined for

different types of stem cells. Based on the power of differentiation, stem cells can be

classified as totipotent, pluripotent, multipotent, and unipotent (table 1).

Term Definition Example Sources

Totipotent Able to produce an entire

being Blastomeres

Fertilized egg

drived cells (1-3

days embryo)

Pluripotent

Able to differentiate to germ

layers of ectoderm, mesoderm

and endoderm

Embryonic stem

cell 5-14 days embryo

Multi potent

Able to produce many cell

types and self-renew over the

lifetime of the being and over

many subsequent generations

if transplanted

Hematopoietic

stem cell

Cord blood, fetal

tissues, bone

marrow, Adult

stem cells

Unipotent

Able to differntiate to only

one lineage, and with limited

or no capacity of self-renewal

Neural stem cell Adult stem cells

Induced

pluripotent

(iPS)

Normal adult cells

reprogrammed to an

embryonic state, able to

produce all tissues

---

Derived from a

non-pluripotent

cell

Table 1. Stem cell classification and potential for differentiation.

Embryonic stem cells (ESCs) are able to produce all tissues and germ lines (sperm and eggs)

and to self-renew indefinitely. These pluripotent stem cells were first isolated in 1998.

However, the resources of ESCs are limited, and since human embryos have to be destroyed

for ESC production, many people oppose the use of this kind of stem cell for scientific

research or therapeutic approaches.

ESCs can be produced in the laboratory in two ways: by derivation from the inner cell mass

(ICM) of a blastocyst in a 5-14 days embryo, or by somatic cell nuclear transfer (SCNT).

SCNT or cloning, which was brought into public attention after cloning of the sheep "Dolly"

in 1997 (Wilmut et al., 1997), is also used as a technique to produce stem cells for basic

developmental biology research and cell-based therapies. Through cloning, the DNA of an

unfertilized egg is replaced with the DNA of the patient's cell. Although a Korean scientist

claimed to extract stem cells from human cloning in 2004 (Hwang, 2004, 2005), his work was

recognized as a scientific fraud later on (Kennedy, 2006). Although there are important

Stem Cells: Ethical and Religious Issues

concerns about the safety of cloning, as Fischbach and Fischbach state, stem cells produced

by therapeutic cloning have the advantage over those harvested from embryos resulting

from IVF or aborted foetuses in that the cells generated through therapeutic cloning are

genetically similar to the cells of the individual who donated the nucleus (Fischbach &

Fischbach, 2004), therefore they are immunologically matched to the patient, which avoids

problems of rejection (Coors, 2002; Weissman, 2002). Another source of pluripotent cells are

human embryonic germ (hEG) cells which are derived from the gonadal ridges of aborted

fetuses (Gogle et al., 2003; Balint, 2001).

Multipotent stem cells have a research history of more than 40 years and have been

successfully used for treatment of some disorders such as leukaemia for decades (Hyne,

2008). The use of these stem cells is surrounded with less ethical and religious debate since

they can be naturally found as adult stem cells throughout the body; however, their limited

potential of differentiation has restricted their practical uses. Also, mass production of

multipotent (and unipotent) stem cells is time consuming.

Inactive adult stem cells (SCs) exist in many tissues and need to be signalled.

Haematopoietic SCs, which are used for bone marrow transplantation in oncology, are a

good example of the use of this kind of SCs in cell and tissue transplantation. Medical waste,

such as amniotic fluid, placenta, menstrual blood, synovial fluid from knee, teeth,

liposuction aspirate, umbilical cords, is a source of adult stem cells (Lewis, 2009).

Induced pluripotent stem (iPS) cells have been reprogrammed with retroviruses to behave

like embryonic stem cells (Hyne, 2008). The methods that reprogram adult human cells to a

pluripotent state were described firstly by two groups of researchers from Japan and the

United States (Takahashi et al., 2007; Blow, 2008). Considering the mutagenicity of the

viruses and the potential to activate oncogenes, and the debate on their properties and

potential as embryonic stem cells, iPS cells are not used as a practical therapeutic agent yet

(Blow, 2008). Further experiments showed that reprogramming genes can be done in safer

ways without the use of viruses (Lewis, 2009).

The main potential use of stem cells in medicine is for cell and tissue replacement therapies.

There are hopes for lifelong treatment of disorders such as Huntington’s disease,

Parkinson’s disease, type 1 diabetes mellitus, myocardial infarction, spinal cord injuries,

stroke, chronic skin ulcers and burns by transplantation of stem cells. The utilization of stem

cells in the treatment of Alzheimer’s disease, avascular necrosis, neural deafness,

osteoarthritis, liver failure, and some autoimmune disorders including multiple sclerosis

(MS), rheumatoid arthritis, and systemic lupus erythematosus (SLE) is also under research.

Stem cell research may pave the way for designing novel approaches in regenerative

medicine. Since ESCs can proliferate without limit and can differentiate to any cell type,

they offer unprecedented access to tissues from the human body, and they have the

potential to provide an unlimited amount of tissue for transplantation therapies to treat a

wide range of degenerative diseases (National Institute of Health [NIH], 2006). Genetic

research, understanding of normal development, research on the differentiation of human

tissues, and birth defects investigations are other potential uses of stem cells. Stem cells can

be used for drug development and toxicity tests too. They can support research on safety

and efficacy of new drugs.

The therapeutic potential of stem cells has been publicized, and much related public

enthusiasm has been reflected in some stories and movies. There are scientific, ethical, legal,

religious, and social challenges for the use of stem cells for cell and tissue transplantation.

Bioethics in the 21st Century

The concerns should be addressed before the widespread use of this science and technology.

We intend to review main ethical issues and religious perspectives in the following sections.

4. Ethical issues

Moral arguments for and against stem cell research and therapy are many, regarding issues

such as the types of cells, the sources and techniques of production, and utilization. There

are few concerns about research on or therapeutic uses of adult stem cells. But embryonic

stem cells have been associated with serious ethical debates. The use of this new science and

technology for human reproduction has triggered ethics and policy disputes around the

world. Human cloning has been a cause of concern for ethicists, lawyers, religious scholars,

sociologists and politicians, among others.

There are different challenges in different societies. The study by Zarzeczny and Caulfield

(2009) confirms the complexity of the issues raised by stem cell research. The results of this

study, which was carried out in Canada, suggest some main themes, including:

theories/views on policy development, issues with focus on science and health, issues

related to the supply of embryos, debates on novel technologies such as cloning, non-

embryonic sources of stem cells, jurisdictional competition, intellectual property issues, the

need for guidelines and standards, research funding issues, and stem cell tourism

(Zarzeczny & Caulfield, 2009).

Related ethical issues may be discussed using different ethical approaches, such as

utilitarianism, deontology, and principlism. Each approach may justify or reject the use of

stem cells in research or therapeutics. For instance, according to the utilitarian approach, the

consequences of stem cell utilization should be assessed using the benefit to harm ratio as a

measure to accept or reject the new technology. In a deontologic (duty-based) approach, the

duty to help those who suffer or to save lives may permit research or therapy with stem

cells. In principle-based ethics, various principles should be discussed collectively to

evaluate the rightness or wrongness of use of stem cells.

People who oppose or support stem cell research can be philosophically divided into

different categories. For instance, some opponents emphasize the dignity of human beings

and that every person is an end and not only a means to some other end. This idea is

consistent with deontology. It means that every person, likely including a foetus, should be

respected and protected (balint, 2001). On the other hand, those who support research on

human stem cells, either in religious or secular bioethics, support the advantages of such

research to save human lives and the duty to relieve suffering in accordance with utilitarian

and duty-based approaches. Some even go so far as to state that such research is a "moral

imperative", considering the potential benefits of ameliorating human suffering (Balint,

2001).

There are important issues, such as respect for human dignity, which may influence these

discussions. Ethical issues will be discussed in the following without reference to the

philosophic basis.

4.1 Human dignity

In the process of stem cell research, stem cells must be extracted from the blastocyst, so the

human embryo is destroyed. Opponents of stem cell research claim that the destruction of

human embryos is morally equivalent to the killing of a human being.

The morality of destroying human embryos for the benefit of others is the main argument in

both secular and religious bioethics. Opinions regarding the ontological status of pre-

Stem Cells: Ethical and Religious Issues

implantation embryos vary widely. Some hold the "conceptionalist" view, according to

which the embryo is a "person", considering its potential to develop into a person. Others

believe that the embryo (and even the fetus) is a "non-person", and that it ought not to be

attributed much, if any, moral status (DeWert & Mummery, 2003).

There is another viewpoint of the "relative value" of human embryos, more than cells but

less than persons (Hinman, 2009). This view states that embryos deserve respect but not to

the same extent as a fully developed person. According to this moral argument, the moral

status of a human embryo gradually increases through its development in the uterus, and at

the point of birth it is entitled to enjoy full rights of human beings (United Nations

Educational, Scientific and Cultural Organization, 2004).

Another moral argument states that the status of embryos differs across milestones in the

process of embryonic development (United Nations Educational, Scientific and Cultural

Organization, 2004). In this argument, the question is at what point after fertilization of egg

by sperm the cell mass becomes a human being. This seems an ethical impasse which

science may not be able to resolve. For ethical decision making on stem cell research, we

should determine when a new human entity comes into existence. According to the

scientific facts, there are significant points for delineation of human embryos, including: the

moment of fertilization, the point of implantation in the uterus, the initial appearance of the

primitive streak (19 days), the beginning of heartbeat (23 days), the development of brain

waves (48 days), the point at which essential internal and external structures are complete

(56 days), the point at which the fetus begins to move (12-13 weeks) (Hinman, 2009), and the

point when the foetus would be viable outside the uterus (Balint, 2001).

As mentioned above, during the third week of human embryo development, the primitive

streak develops and three germ layers appear. Before this stage, embryos can split and

produce two or more embryos; however, after development of the primitive streak, the

embryo is a unique entity. In view of this fact, many believe that ontological individuality

starts at this point, hence the embryo can be used for research prior to this stage; up to 14

days of development (DeWert & Mummery, 2003).

Religious schools also make various points which will be discussed later. There is no doubt

that an embryo is a living being whether or not it merits human rights. However, an entity

would have the full rights and privileges of human beings when personhood begins.

There are different views on preimplantation embryos. Some bioethicists suggested "the

trajectory argument" to defend the human rights of a human embryo before implantation

(Hinman, 2009). According to this argument, since an early embryo has the potential to be a

human being in the future, it deserves protection. However, others claim that an entity

before implantation is no more than a seed. There is also another viewpoint, according to

which human embryos, even if they are not persons, deserve respect (Hinman, 2009). As

Hinman (2009, slide 20) concludes: "We can see some advocates of both sides of the hESCdebate as

accepting the general principle of respect for innocent human life; their disagreement may not be over

the principle, but over the way in which the principle is to be applied in particular cases."

The fear of "instrumentalization" of human embryos is a barrier to create embryos (DeWert

& Mummery, 2003). However, despite opposition to creation of embryos for research, there

are arguments in support of the use of spare embryos in the process of IVF as sources of

embryonic stem cells because such embryos would be destroyed anyway. Several hundred

thousands of unwanted embryos are discarded annually in IVF clinics. The use of such

embryos before the appearance of the primitive streak is supported by many ethicists.

Bioethics in the 21st Century

However, as stem cells that are derived from surplus embryos may cause immune rejection

when transplanted to a patient, some researchers emphasize the production of genetically

identical stem cells by the use of cloning or other techniques in order to avoid immune

rejection in transplantation (United Nations Educational, Scientific and Cultural

Organization, 2004).

The research carried out in Canada (Zarzeczny & Caulfield, 2009) shows that even though

issues related to the moral status of embryos continue to be a main issue in the literature on

stem cell research, discourses associated with the moral status of embryos may not receive

the same attention in social and other realms. For instance, while the moral status of

embryos has a central role in legal discourse, it plays a relatively minor role in print media

(Zarzeczny & Caulfield, 2009).

4.2 Safety

Many people are excited about the potential benefits of stem cells in clinical practice. There

are many claims about the power of stem cells as an unparalleled cure in medicine. Potential

benefits coupled with great public interest have produced significant pressures on scientists

to continue research. Along with the promises, stem cell science poses a threat to human

safety. As Dresser (2010) states, many claims about the therapeutic power of stem cells lack a

solid evidentiary foundation and many data are not examined in human clinical trials. In

other words, there is much to learn regarding the use of stem cells for the treatment of

diseases. Therefore, prior to any decision about using stem cells, their safety and efficacy

must be determined.

Risks of stem cell treatment, including tumors after stem cell injections (Amariglio et al.,

2009, as cited in Lindvall, et al., 2004, 2006), drew attention to safety issues and importance

of medical and ethical standards before clinical application of this new type of treatment.

Some who agree with stem cell research claim that such research is still in the early stages

and very far from clinical, therapeutic or reproductive uses.

Based on the principle of non-maleficence, harms to the embryo cannot be justified by future

benefits to society. It is also suggested that "… the harm done to the society by allowing the

destruction of embryos is more significant." (Balint, 2001).

4.3 Informed consent

Many scientists believe that people are misinformed about stem cells, their sources, their

potential benefits, and harms. It also seems that medical companies and industries are

optimistic about stem cell future. So, a demand for stem cell research and therapy has been

created in many societies. Some centres for the treatment are in countries with a lesser

ethical oversight, such as China and some Eastern European countries. An increase in stem

cell tourism has received attention in many countries (Zarzeczny, 2010). For these reasons,

disclosure of information to patients and their families is essential. Murdoch et al (2010,

page 21) have emphasized that such disclosure should have at least three elements:

"1. Disclose and discuss the potential for real physical, psychological, and economic harm from the

interventions and travel, including costs of the procedure relative to patient’s means.

2. Disclose and relay independent scientific evidence of risk or benefit for a defined intervention.

3. Disclose any evidence of ethical misconduct or questionable practices. This includes:

- Failure to supply local and national evidence of oversight.

- Engaging in questionable patient recruiting practices.

Stem Cells: Ethical and Religious Issues

- Clear misrepresentation, fraud, or patient abuse."

As mentioned before, the extra embryos of IVF clinics which are no longer wanted by the

parents are sources for stem cell research. Obtaining consent for such embryos is

problematic. There are questions of whether consent of biological parents is enough and

how the consent should be obtained and recorded. Also, as Balint (2001) states, there may be

emotional pressure on parents to consent. The parents' feelings and beliefs may also cause

additional anxiety and a sense of guilt about embryo donation for use in research.

Consent of gamete donors in cases of IVF should also be obtained and recorded. Many

ethicists are worried about risks to women who participate in the egg production process. In

the Korean cloning fraud, one ethical problem was related to the egg collection from the

subordinate women staff, which raised the issue of coercion and violation of their rights

(Longstaff et al., 2009, as cited in Saunders & Savulescu, 2008). From a feminist perspective,

the instrumental use of women in the process of the creation of embryos for research is an

important concern, since the creation of human embryos for research purposes requires the

harvesting of eggs from women (United Nations Educational, Scientific and Cultural

Organization, 2004). In animal cloning, there is a need for hundreds of unfertilized eggs to

produce one cloned embryo. In women, there has to be a period of hormone treatment

followed by invasive surgery to obtain oocytes for research purposes. In addition to the risk

of exploitation of women and commercialization of human eggs (United Nations

Educational, Scientific and Cultural Organization, 2004), there may be life-threatening risks

such as Ovarian Hyper-stimulation Syndrome (OHSS).

4.4 Slippery slope

A slippery slope argument is used by opponents of stem cell research, who cast doubt on

the morality of the use of stem cells by reasoning that if we accept the creation and

destroying of human embryos in the process of such research, there is no logical cut-off

point by which we can distinguish the point at which destroying a human embryo is

permissible. As Evers (2002) states, it may open the way to a slippery slope of dehumanizing

practices, such as embryo farms, cloned babies, the use of fetuses for spare parts, and the

commodification of human life.

The right to reproductive freedom in individualistic social systems may be used to justify

reproductive approaches with use of stem cells. Some opponents claim that eradication of

an entity like a human zygote is similar to abortion, which thus has a link to stem cell

research (Dresser, 2010). All societies should take a stand on the issue of eradication of

human embryos in the process of stem cell research.

4.5 Resource allocation and commercialization

There are many patients, scientists, politicians and even bioethicists who have paid tribute

to stem cell therapy and its hypes and hopes (Murdoch, et al., 2010), despite debates on

safety and efficacy. Commodification of human embryos is a concern expressed by many

ethicists. There may be loss of equity in access to stem cell benefits, as many people would

not be able to pay the high cost of this new treatment.

Resource allocation and distributive justice are related important issues. Limited resources

of health care systems raise questions about research priorities in many societies. Stem cell

research is expensive, and its outcome may not be useful for many patients or healthy

people. Thus, it could be argued that money can be more effectively spent for more

Bioethics in the 21st Century

important health care plans which cover a vast range of diseases and large numbers of the

general population.

However, many argue that banning stem cell research by governments would not stop such

research in the private sector. Private research can raise concerns about commercialization of

stem cell research, which may result in unfair distribution of benefits within society (Balint,

2001). So, some conclude that federal funding and support of research on embryonic stem

cells is the only approach that may guarantee the fair distribution of benefits (Balint, 2001).

Moreover, such policy can provide the way for more strict observance of ethical standards

by researchers.

Private sectors usually tend to allocate their resources to fields with high potential of

financial gain. However, priority of resource allocation in the public budget by governments

depends on some other factors, including: public health needs, scientific value of the

proposal, potential for advances in a particular area, distribution across diverse research

areas, and national training and infrastructure needs (Dresser, 2010). Funding stem cell

research is not considered a research priority in some countries, due to other health care

needs and limitations of health budget. Many underdeveloped or developing countries are

obligated to devote research funds to common disorders with high rates of mortality and

morbidity.

Stem cell tourism and fear of negative health consequences due to lack of enough oversight

are other concerns which have attracted special attention among ethicists and medical

practitioners. Such matters deserve separate discussion elsewhere, particularly as they are

not unique to stem cells.

4.6 Other issues

Many ethical issues associated with the use of stem cells apply to biomedical research

generally. Some issues which were discussed above, such as priorities of research and

allocation of limited resources, disclosure of truth about benefits and harms, and obtaining

consent, are prominent in stem cell research. Paying appropriate attention to research

integrity and related matters such as responsible conduct of research, ownership of data,

and authorship, are particularly emphasized in this field.

Another relevant general ethical issue is that of conflict of interests. There are financial

interests for researchers who work in this field. Honesty and openness of researchers, along

with appropriate independent review of research, are required.

Some issues are more specific and require special attention. For instance, stem cells can be

used for the study of normal development of human embryos and for genetic research.

Therefore, concerns about germ lines interventions attempting eugenics have been raised

(Balint, 2001).

An issue is the principle of subsidiarity, according to which stem cell research can be

ethically permissible only if there are no alternatives (DeWert & Mummery, 2003). Some

options have been discussed as alternatives of human embryonic stem cells, which consist

of: human embryonic germ (hEG) cells, adult stem cells, and xenotransplantation. For

comparison of these alternatives, many elements should be analysed, including: burdens

and/or risks, the chance of success and applicability, and the time-scale in which clinically

useful applications are to be expected (DeWert & Mummery, 2003). Low success rates of the

use of hEG cells and uncertain outcomes, and cross-species infections caused by

xenotransplantation and high rates of immunity rejection are the barriers for the first and

third alternatives.

Stem Cells: Ethical and Religious Issues

Adult stem cells experiments have had great success in recent decades. Scientists have been

studying them since the 1960s (United Nations Educational, Scientific and Cultural

Organization, 2004). Avoidance of immunity system rejection problems is an important

advantage of these cells. However, there are many doubts about their developmental

potential and their proliferation capacity as a substitute for embryonic stem cells (Kuehnle &

Goodell, 2002; Gavaghan, 2001).

As mentioned above, iPS cells are suggested as another alternative for human embryonic

stem cells (Hyne, 2008; Takahashi et al., 2007; Blow, 2008). Many experiments have been

done in recent years to test the efficacy and safety of this novel option (Lewis, 2009).

Aborted foetuses are suggested as sources for obtaining germ line stem cells, though critical

issues are raised (Balint, 2001). Women coercion, their safety, stem cell recipient safety,

informed consent issues, and vulnerability of the foetus are concerns which cause this

suggestion to remain controversial.

According to some advocates, stem cell research can save many lives. But the principle of

proportionality urges ethicists to weigh potential benefits and harms. Pursuance of medical

progress at any cost does not seem ethical.

5. Legislation and guidelines

During recent decades, stem cell research has posed a challenge for politicians and national

and international regulatory agencies. Despite challenges across different societies, stem cell

research continues to be conducted by researchers. The need for oversight and regulation to

prevent unethical conduct and negative outcomes is recognized by many scientists. As a

result, international and national bodies have tried to guide stem cell activities ethically.

General ethical guidelines such as the Belmont report (Department of Health, Education,

and Welfare, 1979), Helsinki declaration (The World Medical Association [WMA], 2008), and

International Ethical Guidelines for Biomedical Research Involving Human Subjects

(Council for International Organizations of Medical Sciences [CIOMS], 2002) should be

observed by stem cell researchers. There are also specific stem cell guidelines and standards

internationally and in various countries.

Establishment of international ethical guidelines and legal frameworks for human cloning

was considered at the end of the 20th century. The issue of reproductive cloning was

discussed several times in United Nations agencies after the birth of Dolly in 1997. In 1998,

the United Nations General Assembly endorsed a Declaration in which reproductive

cloning of human beings was banned (United Nations Educational, Scientific and Cultural

Organization, 2004).

The Universal Declaration on the Human Genome and Human Rights (The United Nations

Educational, Scientific and Cultural Organization [UNESCO], 1997) (Section C-Article 11),

and the report of UNESCO’s International Bioethics Committee (IBC) on “The Use of

Embryonic Stem Cells in Therapeutic Research” (UNESCO, 2001) were compiled to address

these complex issues in different societies. Other international organizations such as the

World Health Organization (WHO) compiled relevant resolutions too.

The International Society for Stem Cell Research (ISSCR) has also tried to address relevant

scientific, cultural, religious, ethical, and legal differences across national borders by

preparation of the "Guidelines for the Conduct of Human Embryonic Stem Cell Research"

(ISSCR, 2006). The mission of the taskforce for compiling the guidelines was stated as: "…to

emphasize the responsibility of scientists to ensure that human stem cell research is carried out

Bioethics in the 21st Century

according to rigorous standards of research ethics, and to encourage uniform research practices that

should be followed by all human stem cell scientists globally." Due to the ever-increasing

therapeutic uses of stem cells in clinical practice, the "Guidelines for the Clinical Translation

of Stem Cells", were compiled in 2008 (ISSCR, 2008). The Guidelines address three major

areas of translational stem cell research: (a) cell processing and manufacture; (b) preclinical

studies; and (c) clinical research.

As to the disputes on the time when personhood starts, the guidelines and Acts determine

this. The United Kingdom's Human Fertilization and Embryology Act, for instance,

determines the point of primitive streak development as the point when human life begins

and research must be stopped (Balint, 2001, citation of Human Fertilization and Embryology

Act, 1990).

As Childress (2004) emphasizes, the connection between ethics and public policy remains

important. Two types of public policies have special relevance to human stem cell research,

public policies on use of governmental funds, and public policies on whether, apart from the

use of governmental funds, to permit, regulate, or prohibit activities such as human cloning

(Childress, 2004).

Many societies have attempted to characterize the legal status of the human embryo and

regulate stem cell research. Considerable differences exist between countries in the

regulation of stem cell research. In the United states, the National Bioethics Advisory

Committee (NBAC) decided that creation of embryos purely for research purposes was not

acceptable, while in the United Kingdom, the Human Fertilization and embryology

Authority permits the creation of embryos for research but the embryos must never be

implanted (Balint, 2001). In addition, in the United Kingdom and some other countries

where stem cell research under national regulations is permitted, there are standard

guidelines and recommendations for public and private sectors; there are no such

regulations and supervision in the US (Balint, 2001). The National Institutes of Health (NIH)

provided guidelines on Human stem cell research with the aim of "Removing Barriers to

Responsible Scientific Research Involving Human Stem Cells" (NIH, 2009).

In Canada, Human Pluripotent Stem Cell Research Guidelines released by the Canadian

Institutes of Health Research (Canadian Institutes of Health Research, 2010), and the

Assisted Human Reproductive Act (Health Canada, 2004), are the most important

regulations concerning the use of stem cells in research and reproductive technologies.

In Costa Rica and Germany, eradication of embryos for research purposes is prohibited.

Some countries, such as Belgium and the United Kingdom, allow research on surplus

embryos and created embryos within 14 days after fertilization. In Denmark and Japan,

while research on surplus embryos is permissible, the creation of embryos solely for

research purposes is prohibited (United Nations Educational, Scientific and Cultural

Organization, 2004). Many European countries have prohibited reproductive cloning, but

there is a wide spectrum of diverse religious and secular beliefs about that (Nippert, 2002).

In the Middle East, Iran, as a pioneer country in stem cell research (Ilkilic and Ertin, 2010;

Saniei and De Vries, 2008) that reported the establishment of a new stem cell line in 2003

(Baharvand et al, 2004), has recently established ethical guidelines for stem cell research and

treatments in the country (Nejad-Sarvari et al, 2011).

Banning public funding for stem cell research in some countries like the US caused some

worry about potential "brain drain", but funding the research costs by non-profit and private

sectors has offered many opportunities for scientists to follow such research in these

countries (Dresser, 2010).

Stem Cells: Ethical and Religious Issues

6. Religious perspectives

As mentioned before, determination of the moment at which human life begins is pivotal in

stem cell debates. Ensoulment is defined as the time when the entity becomes a human

being, based on many religions' perspectives, although the moment when the soul arrives is

long disputed.

Judaism considers the extracorporeal embryo in the preimplantation stage as genetic

material, so stem cell research is permissible according to most branches of Judaism

(Hinman, 2009; Childress, 2004; Ohara, 2003; Bioethics Advisory commission, 2000). A

human embryo is not considered as sacred until the fourth month of pregnancy, according

to most Jewish scholars (Pompe et al, 2005). Owing to this fact, research on stem cell and

human embryos is allowed in this period.

In Christianity, while the current dominant belief is that ensoulment occurs at the moment

of conception, the Roman Catholic theologian, Thomas Aquinas, believed that the soul

arrives around the third month of pregnancy (quickening). St. Augustine believed that

personhood begins with ensoulment at forty days of gestation, in accordance with

Aristotle's and Talmudic scholars' views (Balint, 2001). Although this opinion was accepted

by Popes innocent III (1211 AD) and Gregory XIII (1550 AD), increased use of abortion in the

18th century led to a change in the Church's thinking. As a result, Pope Pius IX decreed that

ensoulment occurs at fertilization, and his viewpoint was followed by the Orthodox Church

(Balint, 2001).

Currently, the Catholic Church believes personhood begins at conception (Daar et al., 2004).

Despite strong opposition of Catholics to stem cell research, Protestants have a wider range

of views (Childress, 2004; Ohara, 2003; Bioethics Advisory commission, 2000). Less

conservative Protestant Christians support stem cell research at least before the

development of the primitive streak at 14 days after fertilization (Fadel, 2007).

Most Muslim thinkers accept embryonic stem cell research (Childress, 2004; Ohara, 2003;

Bioethics Advisory commission, 2000), although there are obstacles to the research in some

Islamic countries (Ilkilic & Ertin, 2010). According to Islamic teachings, decisions on stem

cell research and cloning research should be based on advantages and limitations.

Considering inevitable consequences of reproductive cloning, it is prohibited by many

Muslim religious authorities; however, stem cell research and cloning for therapeutic

purposes is sometimes permissible with precautions in pre-ensoulment stages of fetus

development (Larijani & Zahedi, 2004). Most branches of Islam consider ensoulment as the

moment when the entity would have a full value of human beings, though the moral

singularity of humans occurs at implantation.

Holy Quran depicts the different stages of human development in the womb in verses 12-

14 of the chapter (Sura) of Al-Mumenoon (the Believers). Based on these verses and some

other Islamic resources, it is accepted by Muslim scholars that ensoulment takes place at

120 days after conception (Aksoy, 2005; Morrison and Khademhosseini, 2011). It is

noteworthy that in Islam human embryonic life is entitled to respect at any stages even

before the breathing of spirit into the fetus (Fadel, 2007); however, the respect grows as

the weeks pass until ensoulment when the child deserves the full respect of human being.

As Ilkilic and Ertin (2010) state “…the ensoulment gives the embryo an exceptional moral

status, which is decisive for the ethical assessment of any medical intervention affecting

the embryo.” So, experimental activities and therapeutic uses of stem cells are permissible

before ensoulment with necessary precautions when they are justifiable based on Islamic

Bioethics in the 21st Century

principles such as the public interest. Looking for scientific advancements and seeking

new treatments for human disorders may also apply to justify the use of human

embryonic stem cells (Fadel, 2007).

The source of stem cells has been considered by Islamic scholars in issuing fatwa (religious

decree) on permissibility of stem cell research. For instance, the scholars in the confereence

of the Muslim World League’s Islamic Jurisprudence Council held in Mecca in 2003 issued

that the use of stem cells for therapy or scientific research is permitted as long as the cells’

sources are permissible. Adults who consent, placenta or umbilical cord blood, excess

fertilized eggs produced during the course of IVF and spontaneously aborted embryos are

some acceptable resources, and intentionally aborted fetuses are forbidden to be used as a

source for stem cells (Fadel, 2007, citation of Muslim Word League, 2003).

7. Conclusion

Human stem cells have introduced many hopes in medicine. There are still many scientific

questions and unknowns surrounding the issue. Stem cell therapeutic options may not have

widespread application in the short term. Significant concerns exist about the ethical, social

and legal consequences of the use of the cells in research and treatment. Bioethicists,

religious leaders, regulatory bodies, and political bodies have discussed these matters and

attempted to address the consequences in appropriate ways. We aimed to review some

relevant challenges in this chapter, in the hope of strengthening the relation between science

and ethics. The various positions that different monotheistic religions have adopted

regarding this novel type of research were also reviewed in this chapter.

Stem cell science is rapidly evolving in the world; however, finding alternatives and

carrying out parallel research are important. While some scientists believe that ethical

concerns are barriers to scientific progress, others are worried about the harms and seek

new alternatives such as iPS cells which can address the issue of human dignity in the field

of stem cell research.

Given the promises of stem cell research, it seems that there is a conflict between the duty to

reduce suffering and the duty to respect human life. It is more sensible to regulate stem cell

research than to ban it. In countries with government-sponsored activities in the field of

stem cell research, ethical observance and control over private and public activities can be

more effectively maintained.

Stem cell markets and tourism should be controlled, regulated and supervised. The general

public should be engaged more actively in this discussion and in finding solutions and

guidelines.

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The “Cultural Differences”

Argument and Its Misconceptions:

The Return of Medical Truth-Telling in China

Jing-Bao Nie

1University of Otago

2(Adjunct/Visiting) Hunan Normal University and Peking University

1New Zealand

2China

1. Introduction

Cultural differences are real and arresting. They are noted, discussed and debated in

bioethics, as in contemporary social and political life in general. But cultural differences can

be very tricky to interpret. Their factual status, moral meanings and political implications

are rarely, if ever, as straightforward as they appear. Cultural differences can be seriously

misconceived, misinterpreted, misrepresented and misused in various ways. Empirically

problematic perceptions, ethically dubious judgments, and practically contentious

resolutions can easily become entangled when considering matters of cultural difference.

Many works on cross-cultural bioethics have often merely served to reinforce deeply rooted

stereotypes and myths regarding both Western and non-Western cultures, especially the

latter. A glaring example of such confusion is the appeal to perceived cultural differences as

an ethical justification for rejecting those norms perceived as originating in the West and

strongly advocated there – such as truth-telling by medical professionals, informed consent,

patients’ rights, women’s rights and human rights in general. It is argued and widely held in

certain circles that such practices and values are irrelevant and inapplicable to non-Western

societies and cultures.

In this paper, I will critically examine “the cultural differences” argument as it has been

formulated against medical truth-telling in the Chinese context. I will demonstrate that,

despite its popularity and apparent plausibility, the argument is seriously flawed both

descriptively and normatively. Elsewhere, through comparisons between China and the

West and supported by extensive primary Chinese materials, I have shown that direct

disclosure is far from culturally alien to China and that, on the contrary, there was once a

long, though forgotten, tradition of medical truth-telling in China (Nie 2011: Chapter 6).

Here, I argue that, even if medical truth-telling were culturally alien to China, as usually

assumed, ethical imperatives exist to reform the contemporary mainstream Chinese practice

of nondisclosure or indirect disclosure through family members. Moreover, I will offer a

Confucian defence of truth-telling as a fundamental ethical principle and a cardinal personal

and social virtue which physicians would do well to take seriously. In the process, I expose

some common intellectual barriers to cross-cultural understanding: dichotomizing different

Bioethics in the 21st Century

104

cultures as “radical others” to one another, promoting the tyranny of existing cultural

practices, and obscuring the real ethical issues at stake. To put the matter positively, I seek

to present the elements of a more adequate cross-cultural bioethics or a “transcultural

bioethics” – an ethics that resists cultural stereotypes, upholds the primacy of morality, and

acknowledges the richness, openness and internal heterogeneity of medical ethics in every

culture, whether in China or elsewhere.

2. The “cultural differences” argument

It is known far and wide that, in sharp contrast to most Western countries where

truthfulness constitutes an essential, even legally required, element of good medical

practice, medical professionals in contemporary China (including Hong Kong and Taiwan)

customarily withhold from patients crucial information about terminal illnesses such as

cancer. Any information given out is usually restricted to family members only, and is often

given in an overtly paternalist manner (e.g., Kleinman 1988: 152, Li and Chou 1997, Pang

1998, 1999, Tse, Chong and Fob 2003, Fan and Li 2004, Tang and Lee 2004, Zhu 2005, Zeng,

Li, Chen and Fang 2007, Tang et al. 2008).

This situation is not restricted to China. Nondisclosure or indirect disclosure through family

members is the mainstream practice in other Asian countries such as Japan and Nepal, as

well as in other parts of the world such as the Middle East and Eastern and Southern Europe

(e.g. Surbone 1992, Mitsuya 1997, Gongal et al. 2006, Mobereek et al 2008). In different

countries or within different ethnic groups within the same country, patients suffering from

cancer and other terminal illnesses receive very different levels of information about their

diagnosis, prognosis, and therapeutic options (e.g. Macklin 1999, Mitchell 1998, Mystakidou

et al. 2004, Tuckett 2004, Hancock et al. 2007, Surbone 2006, 2008). As the title of an editorial

by an Italian physician in the journal Support Care Cancer characterizes it, there is a

“persisting difference in truth telling throughout the world” (Surbone 2004).

According to more recent literature, although “there is a shift in truth-telling attitudes and

practice toward greater disclosure of diagnosis to cancer patients worldwide”, “partial and

nondisclosure is still common in many cultures that are centered on family and community

values” (Surbone 2008, 237). Thus this striking cultural difference—direct disclosure in most

Western countries vs. non-disclosure or indirect disclosure in most non-Western societies—

is still prevalent in the twenty-first century.

It is from acknowledging this cultural divide that the “cultural differences” view, that

opposes medical truth-telling in non-Western societies like China, has taken root. Two

Chinese medical ethicists put the issue succinctly: “In contrast [with the West], Chinese

medical ethics, even today, in theory and in practice, remains committed to hiding the truth

as well as to lying when necessary to achieve the family’s view of the best interests of the

patient” (Fan and Li 2004, 180). Direct truth-telling – the so-called “Western individualistic

mode” – is defined as being culturally alien to China and therefore morally unsound

because it violates so-called “Chinese familial values”.

In Japan, similar arguments have been put forward to reject medical truth-telling and

replace it by a family-centered style of informed consent. A major rationale behind the

distinction holds that the construal of the self in Japanese and Western culture is to be

defined as “interdependent vs. independent” respectively, or, to put it another way, in

terms of the family vs. the individual (Akabayashi and Slingsby 2006).

The “Cultural Differences” Argument and Its

Misconceptions: The Return of Medical Truth-Telling in China

105

The cultural differences argument against medical truth-telling can take a number of

different forms. In the Chinese context, one common argument, in the form of a syllogism,

goes like this:

Major premise: Different cultural norms and practices ought to be respected and maintained;

Minor premise: In contrast to the Western practice of direct disclosure regarding terminal

illness, the cultural norm in China is nondisclosure or indirect disclosure through family

members;

Conclusion: Therefore, medical professionals should refrain from telling Chinese patients the

truth about their terminal illness.

A more sophistical version of the argument goes thus:

First premise: Different cultural norms and practices ought to be respected and maintained;

Second premise: Chinese and Western cultures are fundamentally and radically different from

each other;

Third premise: Truth-telling is the Western cultural norm and is founded on individualistic

Western culture;

Fourth premise: Nondisclosure or indirect disclosure through family members is the Chinese

cultural norm and is founded on family-oriented Chinese culture;

Conclusion: Therefore, nondisclosure or indirect disclosure through family members should

be maintained and the practice of medical truth-telling rejected in China.

Whatever form it takes, the cultural differences argument consists of two core claims—one

descriptive and the other normative. The empirical or descriptive claim generalizes secrecy

and lying to the sick and dying as the representative and authentic cultural norm for

Chinese. The normative claim insists the practice of nondisclosure should be maintained in

order to respect perceived cultural differences. The descriptive claim is more widely held

than the normative one: those who subscribe to the normative claim always found their

position on the descriptive claim. Yet, those who accept the descriptive claim do not

necessarily agree with the normative claim; they are thus free to take an ethical position

against nondisclosure or indirect disclosure.

3. The current debate in China

Defying its contemporary stereotype as a monolithic, changeless nation or (in the famous

metaphor of Napoleon) a “sleeping lion”, China has always been in a state of flux. In the

past three or so decades – a period designated by the Chinese authorities as one of

“reform and openness” – the enormous social and economic transformations undergone

by China have had a profound impact on the history of both China and the world. On the

medical front, the patient-physician relationship, including the handling of medical

information relating to incurable and terminal diseases, has undergone a comparable

“revolution”. In the 1980s when I was a medical student and intern in China, it was

standard practice that patients were never told directly about their terminal illness. We

were instructed to conceal such a diagnosis and even lie to the sick and dying – for

instance, not to write the Chinese character for cancer, ai, on the patient’s card, but the

English abbreviation Ca. This cloak of secrecy surrounding the terminally ill was (and still

is) referred to by a special quasi-medical term – “protective medical treatment” (baohuxing

yiliao).

Since the 1990s and especially the early 2000s, however, the practice of withholding

crucial medical information has been challenged by patients, medical professionals, and

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106

the general public. An historic change is happening in China, a shift from secrecy and

lying toward honest and direct disclosure. In 2008, thirteen hospitals throughout China

and the premier Chinese journal Medicine and Philosophy jointly issued a series of

documents on informed consent (Yixue Yu Zhexu 2008, 1-12). One of them is entitled

“Guiding Principles on Truth-telling to and Consent from Cancer Patients”. While it

promotes only partial disclosure and insists on the necessity of “appropriate

confidentiality” (ibid, 7-8), this document indicates that the Chinese debate on the issue

has subtly shifted from whether patients should be told about their condition to when and

how they should be best informed.

In many ways, the Chinese debate closely resembles the Western debate of the 1960s and

1970s. As a matter of course, advocates of honest and direct disclosure take up the language

of rights – the right of the patient to know and decide. They also call attention to the damage

done by secrecy and concealing the truth from patients, as well as the benefits of honest

communication for both patients and physicians. On the other side of the debate, defenders

of nondisclosure, especially medical professionals and family members, emphasize the duty

to protect patients and, at least, to avoid doing harm. It is assumed that the communication

of complex and negative medical information is bad for patients’ morale, if not beyond their

intelligence. It has often been asserted, not only in the mass media but also in the medical

and academic literature, that telling the truth about terminal illness frightens and depresses

patients, deprives them of hope, and may even shorten their lives. It has been circulated that

young women are more vulnerable than other groups and are more likely to commit suicide

after learning of a negative prognosis.

The Chinese debate differs in one salient area from that conducted in the West several

decades ago: the issue of cultural differences. A common argument invoked to oppose

medical truth-telling in China lies in the appeal to cultural differences, in particular to

Chinese values and cultural context. Indeed, the invoking of the cultural argument raises a

number of questions regarding the current Chinese trend to honest and open disclosure. Is

this new development merely an aping of the contemporary Western norm? Is it a

consequence of Western cultural hegemony or even of bioethical imperialism? More

fundamentally, is this current shift in attitudes merely a change of fashion or is it based on

sound moral foundations? If the cultural differences argument against medical truth-telling

in China is valid, then current efforts to reform the still widespread practice of secrecy and

lying to the sick and dying are heading in the wrong direction.

But the argument against this reform is seriously flawed. In what follows, I reveal and

discuss a number of empirical and normative problems with this argument, however

appealing it may be on the surface.

4. Dicthotomizing east and west

The cultural differences argument is anchored in and perpetuates a deeply rooted and still

prevalent habit of thought: the dichotomizing of the West and the non-West as “radical

others” to one another (for a critical examination of what can be called the “fallacy of

dichotomizing cultures,” see Nie 2011, especially Chapters 1 and 2). In bioethics, this

polarization of East and West is manifested in the popular but specious idea of “Western

individualist bioethics” vs. “Asian communitarian bioethics” (Nie 2007). According to this

way of thinking, the dominant practice or official position of a given culture or social

group is deemed the authentic representative of the culture or social group concerned.

And the differences between and among cultures are perceived to be radical,

The “Cultural Differences” Argument and Its

Misconceptions: The Return of Medical Truth-Telling in China

107

fundamental, and largely incompatible with each other. As a result, the actual richness

and great internal plurality of a given culture and the complexity of cultural differences

within and between different groups are oversimplified and all too often seriously

distorted.

Drawing on and perpetuating this cultural dichotomy, the cultural differences argument

against medical truth-telling in the Chinese context has crudely distorted the historical and

socio-cultural realities of both China and the West. As the first part of my comparative study

of medical truth-telling has uncovered (Nie 2011, Chapter 6), historically speaking, it is

simply incorrect to claim that truth-telling is the representative Western cultural norm while

it is culturally alien to China. Far from being an age-old cultural tradition, in the West

medical truth-telling did not become the accepted standard until the 1970s or even later – it

has a history of a few decades only. And, on the other side, totally contrary to what has been

universally assumed and presented both inside and outside China, the traditional practice

and norm of Chinese culture and medical ethics was for physicians to disclose their

diagnosis and prognosis of terminal illness truthfully and directly to patients. A great deal

of primary historical material, including the biographies of ancient medical sages and

hundreds of celebrated physicians in different dynasties (Chen 1991[1723]), reveals a well-

established Chinese tradition of medical truth-telling that dates back at least twenty-six

centuries. Ironically, the contemporary mainstream Chinese practice of nondisclosure as a

“historical” phenomenon has a great deal to do with an older Western norm of concealing

medical information.

5. Chinese patients want to know the truth

Sociologically, the cultural differences view has assumed that Chinese patients are not only

kept in ignorance of their condition, but even prefer things this way. However, in total

contrast to this assumption, the great majority of Chinese people, like Westerners, want to

know the truth about their medical condition if suffering from serious illness.

In a telephone survey of 2674 Chinese households conducted in Hong Kong in 1995, 95% of

1138 interviewees aged between 18 and 65 indicated that they would prefer knowing their

medical diagnosis, even if the outlook was grave. The same proportion said they would

object if their family only was informed, while they themselves were not told. And 97% of

respondents would want to know their prognosis. The researchers concluded that the

patterns of preference shown by Chinese people in Hong Kong were “very similar to those

reported in studies on Western populations” (Fielding and Hung 1996). Taiwanese cancer

patients also expressed a strong preference for medical professionals to tell them the truth,

even before informing relatives (Tang and Lee 2004).

The same is true of mainland Chinese. In the early 2000s, speaking to a class of about 60

students, mostly postgraduates, in one of the leading ethics programs in China (in Hunan

Normal University located in Changsha, a central southern Chinese city), I asked if they

would like to know the truth if they were diagnosed with a terminal illness. A large majority

responded “yes” (about 50), and only a handful said “no”.

Despite some deficiencies in sample selections and research design, many extensive surveys

conducted throughout mainland China clearly indicate the preference of the great (or even

overwhelming) majority of Chinese patients suffering from terminal illness to be fully

apprised of the medical facts about their condition. A survey of 311 cancer patients in

Guangzhou in southeast China found that 72.99% believed that patients should be fully

Bioethics in the 21st Century

108

informed; 24.12% responded that the decision should depend on the wishes of the patients

themselves; and only 2.89% thought that patients should not be told about their cancer

diagnosis (Huang, Wang, Zhang, Lü and Li 2001). In a survey conducted in Shenyang,

northeast China, involving 198 hospitalized elderly cancer patients and 312 family members,

94% of patients and 82.7% of family members considered it essential for the truth to be told

about their terminal illness, and 97% of patients and 90.4% of family members believed that

the sharing of accurate medical information would improve the outcomes of treatment (Gao,

Zou and Yang 2006). Another survey of 302 cancer patients in Wuhan, central South China,

concluded that, in general, cancer patients are very keen to know the truth about their

illness and that the practice of “protective treatment” had resulted in distrust of medical

professionals and increased concerns about the seriousness of their condition (Zeng, Zhou,

Hong, Xiang, and Fang 2008).

However, the cultural difference view is accurate on one point – in China, most medical

professionals and the majority of family members are unwilling to inform patients truthfully

(see the survey results presented below). Interestingly, when they were asked whether or

not they would like to know the truth if they were themselves had been diagnosed with

terminal illness, the great majority said they would want to know. A survey conducted in

2004 among 180 nurses in Shandong in Northeast coastal China showed that, when

imagining themselves as patients, they would prefer to be informed even though, as medical

professionals, they would hesitate to tell the truth to their own patients (Zhu 2005, 73). When

the nurses put themselves in their patients’ shoes, the overwhelming majority of them,

92.6%, preferred to know the diagnosis and prognosis of severe and terminal illness.

However, when asked whether they as nurses should inform their patients about their

adverse medical conditions, 71.6% said that they would withhold the truth. When asked to

imagine themselves as patients’ family members, only 2.5% would speak directly and

immediately, 69.1% would choose to tell the truth after prevaricating for a time, and 28.4%

would not disclose the condition in any circumstances (Ibid). A survey of 634 doctors and

nurses, conducted in Wuhan, again illustrates that medical professionals are reluctant to

speak candidly about cancer; that patients are aware of that they have insufficient

knowledge about their medical condition; and that physicians are inclined to let family

members, rather than patients, make important decisions (Zeng, Li, Chen, and Fang 2007).

As presented in the second section of this chapter, there are signs that the attitudes of

mainland Chinese medical professionals are changing. In 2009, lecturing to a class of 50

medical students at Peking University Health Science Centre, a leading medical school in

China located in Beijing, I asked the class whether they would tell patients about their

diagnosis and prognosis of terminal illness. The great majority answered “yes” by raising

their hands.

Other surveys confirm the disparity between patients’ wishes on the one hand and the

reluctance of family members on the other. In a survey of 175 patients and 238 family

members visiting a hospital clinic in Beijing (He, Wang, Tian, Zhou and Wang 2009), 42% of

patients wanted to be told immediately after a diagnosis of cancer was confirmed, 31.4%

wanted both patients and family members to be told together, and 26.3% preferred that only

family members be informed. However, only 2.1% of family members wanted the diagnosis

to be communicated directly to the patient – although 16.4% wanted both patients and

family members to be told. The contrasts in this survey are stark: whereas nearly three

quarters of patients wanted to be informed, either alone or with family members, more than

The “Cultural Differences” Argument and Its

Misconceptions: The Return of Medical Truth-Telling in China

109

three quarters of family members preferred that doctors inform them alone. In another

survey of 194 family members of recently diagnosed and hospitalized cancer patients, 57.7%

disagreed and 42.3% agreed that patients should be told (Sun, Li, Sun and Chang 2007). A

further survey of 382 patients and 482 relatives in Chengdu, Southwestern China, indicates

that cancer patients were more likely than family members to believe that patients should be

informed (early stage, 90.8% vs 69.9%; terminal stage, 60.5% vs 34.4%) and that most

participants preferred being told immediately after the diagnosis (Jiang, Li and Li et al.

2007).

One ethical question that arises from the disagreement between patients, their families, and

health care providers, disclosed by these studies is – what should be done when patients

want to know about their condition but medical professionals and relatives prefer to

withhold information and even lie to them? In Chinese culture, the Golden Rule taught by

Confucius is widely known and respected: “Do not impose on others what you do not wish

for yourself” (jishuo buyu, wushi yuren). If the general preference of Chinese people for

knowing the truth about terminal illness is interpreted as a wish not be lied to or to remain

in ignorance, then, according to the Golden Rule, it is ethically unacceptable for medical

professionals and relatives to impose on patients what they consider to be in the patients’

best interests, regardless of what patients themselves prefer.

Another ethical question arises over the significant proportion of patients who prefer not to

know about their prognosis. The short answer is that one should not impose the unpalatable

truth upon this group. To ignore the wish not to know is as wrong as dismissing the desire

to know. Perhaps pre-diagnosis informed consent is required to address this.

6. Harms done by secrecy and untruthfulness

As Tolstoy’s The Death of Ivan Ilyich and Solzhenitsyn’s Cancer Ward so vividly illustrate,

patients can often sense the seriousness of their illness even though both medical

professionals and relatives strive to keep the truth from them. My own experience as an

intern at a Chinese county hospital in the 1980s confirms the reality of this instinctive

awareness of their condition by patients. In fact, a major practical difficulty of hiding the

truth in these circumstances is that it is almost impossible to carry out successfully. Humans

communicate with each other not only through language, but also through their social

context, body language, and by many other means. The specialised wards and hospitals that

patients find themselves in, and the gestures of medical professionals, relatives and friends

can easily reveal the truth, despite all efforts to hide it. For the patients concerned, whatever

others may tell them, the secrecy surrounding their treatment reveals a truth of paramount

importance – their illness is serious.

Even if it were feasible to hide the truth from patients, the practice of nondisclosure—the

norm in China today—should be reversed because it is harmful to patients. On the one

hand, the advocates of nondisclosure have offered no compelling evidence of its benefits for

patients or their families. On the other hand, they often downplay or ignore the enormous

harm that the practice of nondisclosure and evasion has caused to patients, families, the

medical profession, and society at large. In addition to dismissing patients’ wish to know,

the practice of nondisclosure increases the feelings of abandonment of those suffering from

terminal illness and undermines the bonds of social trust, in particular those between

patients and medical professionals.

Bioethics in the 21st Century

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For the cultural differences argument, the ethical rationale for disclosure turns on the

question of individual rights and personal autonomy. The norm of medical truth-telling is

thus arguably not applicable to those societies and cultures where the language of

individual rights and autonomy is largely absent. It is true that, politically, the shift from

nondisclosure to disclosure that occurred in most Western countries around the 1970s had a

great deal to do with the patients’ rights movement. And, in bioethics, disclosure and

informed consent are often theoretically justified out of respect for the patient’s autonomy, a

leading principle in the discipline. However, it is a mistake to regard the ethical rationale for

direct disclosure as wholly based on the notions of individual rights and autonomy. There

are other sound ethical reasons for direct disclosure—for instance, the principle of

beneficence, a fundamental value for almost every healing system and medical ethics

tradition worldwide.

Although often overlooked in cross-cultural discussions of truth-telling and informed

consent, a major factor in the historical shift toward disclosure in the West was the practical

necessity for effective (but not overly aggressive) therapeutic intervention. Jay Katz’s The

Silent World of Doctor and Patient, a classic of bioethics, has highlighted this crucial point. The

practice of truth-telling and informed consent is grounded not only in the principle of

autonomy or self-determination, but also in good therapeutic management in face of the

problem of uncertainty in medicine and the new challenges that have arisen in caring for

seriously ill and dying patients. Nondisclosure and untruthfulness are not ethically

justifiable because “[t]he iatrogenic deprivation of information makes a powerful

contribution to patients’ sense of abandonment.” (Ibid, 212)

Doctors’ ready retreat behind silence—apparent to patients by doctors’ demeanor when

they keep most of their thoughts to themselves, deprive patients of vital information, or pat

patients on the back and assure them that everything will be all right and they need not

worry—makes patients feel disregarded, ignored, patronized, and dismissed. (Ibid, 209-210)

In the words of two other authors, “Tacitly to impose silence, denial, deception, and

isolation upon the dying patient may itself cause suffering and bring about bereavement of

the dying, a state of premortem loneliness, emotional abandonment, and withdrawn

interest” (cited in Katz 2002: 222). The practice of nondisclosure thus serves medical

professionals’ interests more than those of patients. Disclosure and informed consent, on the

other hand, “seek to protect patients from the ravages and pain of abandonment” (Ibid, 208).

In the late nineteenth century, Tolstoy imaginatively rendered the detrimental effects of

lying to the patient with terminal illness:

Ivan Ilyich suffered most of all from the lie, the lie, for some reason, everyone accepted,

that he was not dying but was simply ill, and that if he stayed calm and underwent

treatment he could expect good results. Yet he knew that regardless of what was done,

all he could expect was more agonizing suffering and death. And he was tortured by

this lie, tortured by the fact that they refused to acknowledge what he and everyone else

knew, that they wanted to lie about his horrible condition and to force him to become a

part of that lie. This lie, a lie perpetrated on the eve of his death, a lie that was bound to

degrade the awesome, solemn act of his dying to the level of their social calls, their

draperies, and the sturgeon they ate for dinner, was an excruciating torture for Ivan

Ilyich. And, oddly enough, many times when they were going through their acts with

him he came within a hairbreadth of shouting: “Stop your lying! You and I know that

I’m dying, so at least stop lying!” (Tolstoy 1981, 102-103)

The “Cultural Differences” Argument and Its

Misconceptions: The Return of Medical Truth-Telling in China

111

Acknowledging to patients the seriousness of their medical condition may not be caring or

healing in itself (although one could argue that it is), but it is at least the starting point for

any good caring and healing regime. Medical professionals and other caregivers may lack

the power to truly relieve the suffering of gravely ill and dying patients, but, as Ivan Ilyich

urged, they can “at least stop lying”.

Those who defend the practice of nondisclosure in China may contest that Chinese patients

do not feel the abandonment, loneliness and agony that Ivan Ilyich or Western patients

experienced when deprived of critical medical information. But, unless convincing empirical

evidence is provided for this imagined cultural difference, one must assume that Chinese

patients do not differ radically from their counterparts in the West in this regard.

The major concern in contemporary China, as in the West a few decades ago, is that open

and direct disclosure may harm patients. Yet, in Western countries where medical truth-

telling has now become firmly established it has been shown that concerns over the

presumed psychological and physical harms to patients are in most cases unfounded. And it

need hardly be said that such paternalistic attitudes seriously underestimate the intelligence,

resilience and resolve of patients suffering from terminal illness in dealing with the realities

of death and dying.

Lying has a further serious detrimental effect – the harm done to the patient-physician

relationship. Social trust is the foundation of any good communal life. Lying to patients

undermines their trust in medical professionals, just as lying in public life does lethal

damage to the sustaining and nourishing of social trust. So nondisclosure and

untruthfulness can hardly be justified by either “individualistic” or “communitarian”

values.

7. The question of family

As we have seen, a key element of the cultural difference view that defends the Chinese

practice of nondisclosure stems from a highly legitimate and important concern – the

interests and integrity of the family. However, a number of the assumptions and assertions

involved in defending this concern are empirically problematic and ethically misleading.

Although detailed discussion of the role of the family in relation to bioethics from a

Chinese-Western comparative perspective needs much more space, I wish to at least raise a

few questions on the subject here.

Firstly, based on the popular dichotomy of China and the West as “radical others”, the

cultural differences argument posits a cross-cultural distinction, asserting that the family is

central or even unique in Chinese culture but not so in the West. Those who would make

this assertion are very selective and arbitrary in their choice ofcultural traditions within

China and the West. Several major Chinese schools of thought and socio-political

movements such as Daoism, Moism, the New Culture Movement in the early twentieth

century and Chinese socialism – both in its ideology and in its political-economic system –

have all challenged the primacy of the family. At the same time, the essential role of the

family in Western civilization (e.g., in Judeo-Christian tradition) as well as in Western

bioethics has very often been downplayed and even dismissed. The truth is that, both as an

essential social institution and as a cardinal moral value, the family has always been a vital

element of any society or culture, whether in the East or in the West.

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Secondly, the practice of nondisclosure in China has been attributed to the value placed by

Confucianism on the primacy of the family. Yet, as I showed elsewhere (Nie 2011), the well-

established Chinese tradition of open and direct disclosure on medical matters was

endorsed by one of the key Confucian moral ideals, that of cheng (truthfulness, sincerity).

Thirdly and most importantly, the argument about the family assumes that the practice of

nondisclosure or indirect disclosure is more beneficial to the family than that of direct

disclosure. However, there is no empirical evidence to support this. Secrecy and lying can be

very harmful to family relationships as vividly portrayed, once again, in Tolstoy’s Death of

Ivan Illich. On the contrary, a strong case can be made that direct disclosure may better serve

families affected, and family values, in than nondisclosure and deceit.

Drawing on the classic work of Sissela Bok (1989 [1978]), who condemns deception in public

life, including lying to dying patients, as both ethically unjustifiable and practically harmful,

some Western scholars have challenged the “cultural difference” view of truth-telling to the

sick and dying in the Chinese context (e.g. Wear 2007). Still, we are warned to “studiously

avoid presuming to take a firm stand” on lobbying for truth-telling as a general rule in Chinese

society because the available data allegedly do not give a clear picture on two crucial points at

the heart of the realted ethical dilemma: what Chinese patients typically want, and whether

medical truth-telling will undermine the traditional Chinese family (Ibid).

However, as discussed above, we do have reliable data on the preference of the majority of

Chinese to know the truth about terminal illness. As for the relationship between truth-

telling and the family, the practice of direct disclosure in the West over the past several

decades suggests that disclosure in itself does not necessarily harm the family as a social

institution or as a locus of moral value. Truth-telling can empower family members to better

support dying patients, attend to the needs and wellbeing of their loved ones, and diminish

the feelings of abandonment and loneliness experienced by their suffering relative. In such

difficult times when, as a Chinese saying expresses it, the whole family suffers if a single

member is in pain (yiren xiangyu, mandang bule), truth-telling can strengthen, rather than

weaken, the bonds of love and interdependence among family members.

8. The Confucian morality of truthfulness and its ethical implication for

medical practice

The contemporary Chinese practice of non-disclosure or indirect disclosure has been

presented and argued to be justifiable and preferable according to Confucianism (e.g. Fan

and Li 2004). However, this interpretation of Confucianism is historically groundless (see

Nie 2011: Chapter 6) and normatively wrong and misleading. In other words, the

contemporary dominant – though challenged – practice in China cannot be justified by the

ethical principles and ideals of major Chinese moral, political and spiritual traditions such

as Confucianism.

In Confucianism, the highest moral ideals or principles are ren (humanity, humaneness), yi

(righteousness) and li (the correct performance of rites), although scholars disagree about

which has primacy (for a discussion of Confucian professional ethics of medicine, see Nie

2011: Chapters 11 and 12). While chengxin (truthfulness, honesty, trustworthiness or

sincerity), another virtue highly regarded in Confucianism, is often used as a single phrase

in modern Chinese, in classical Chinese cheng and xin are two closely related but different

concepts, especially in Confucian tradition. Confucius himself discussed xin frequently in

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the Analects. While it rarely appears in the Analects, cheng is a key term in Neo-Confucianism

and in other two Confucian classics, The Great Learning and The Doctrine of the Means.

The necessity of acquiring xin is a major theme in the Analects. According to a contemporary

Chinese scholar, the term – meaning honesty, faithfulness and truthfulness – appears at least

24 times in the “Bible of China” (Yang1980, 257). The other fundamental Confucian concepts

of ren, li and yi appear 108, 74, and 24 times in the Analects respectively (Ibid, 221, 311, 291).

Since the early Han Dynasty (c. the 2nd century BCE) when Confucianism was established as

the official ideology of the state, xin has been regarded as the fifth of the Five Cardinal

Virtues (wuchang) of Confucianism. Confucius used the metaphor of the yoke or horse

harness to illustrate the importance of honesty and truthfulness for both individuals and

social life (II, 23):

The Master said, “I do not know how a man without truthfulness is to get on. How can a

large carriage be made to go without the cross-bar for yoking the oxen to, or a small carriage

without the arrangement for yoking the horses?” (Legge 1971 [1893], 153)

Confucius placed a very high value on xin, stating that “No human being can stand without

truthfulness” (XII, 7) and, in The Great Learning (III, 3), “In communication with people, he

[ie, the truthful person] abides in faithfulness.”

While the term cheng (sincerity, authenticity or truthfulness) is rarely mentioned in the

Analects, it is a crucial concept in other Confucian classics and for Confucianism in general.

The term embodies a complex nexus of metaphysical, ethical, psychological, and spiritual

meanings, as the following quote from The Doctrine of the Mean (XX, 18) indicates:

Sincerity [truthfulness] is the way of Heaven. The attainment of sincerity is the way of men.

He who possesses sincerity, is he who, without an effort, hits what is right, and apprehends,

without the exercise of thought; – he is the sage who naturally and easily embodies the right

way. He who attains to sincerity, is he who chooses what is good, and firmly holds it fast.

(Legge 1971[1893], 413; emphasis original)

Philosophically, this passage is comparable to Kant’s discussion of “the good will”. Still,

however sophisticated the ramifications of the term may be, at the most basic level, like xin,

cheng equates to one of the most fundamental moral maxims endorsed by most if not all

human societies and ethical systems: be honest and, at the very least, do not deceive.

It is important to point out that, while the ethical principle of truthfulness is essential for

Confucianism, this value is not absolute. In certain situations, concealing the truth is

certainly an acceptable course, even a praiseworthy one. According to a story in the Analects

(XIII, 18):

The duke of Sheh [Ye], informed Confucius, saying, “Among us here there are those who

may be styled upright [or just] in their conduct. If their father has stolen a sheep, they will

bear witness to the fact.”

Confucius said, “Among us, in our part of the country, those who are upright are different

from this. The father conceals the misconduct of the son, and the son conceals the

misconduct of the father. Uprightness [or justice] is to be found in this.” (Legge 1971 [1893],

270).

In one of the early dialogues of Plato, Euthyphro, Socrates challenged a similar belief that it is

right to indict one’s father for committing manslaughter. Many commentators, ancient,

modern and contemporary, have debated the rationale behind the position taken by

Confucius here. For the purposes of our discussion, the point is that, in striking contrast to

Kant’s deontological ethics, truthfulness is not an absolute value in Confucianism.

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What are the implications of the Confucian morality of truthfulness for medical practice

regarding whether medical professionals should tell the patients the dire diagnosis and

prognosis? First and foremost, as a general maxim for medical practice, healthcare

professionals should abide by truthfulness as strictly as they can, following the consensus

established by traditional Chinese medical ethics over the centuries. To deceive patients for

motives of personal gain is always absolutely wrong and morally corrupt. Even when

delivering painful news, as in the diagnosis and prognosis of terminal illness, truthfulness

should not be easily set aside and medical practitioners should practice open and direct

disclosure as a general rule, following the norm of the ancient Chinese medical sages.

Moreover, following the example of the systematic modern Chinese text on the professional

ethics of medicine (Nie 2011: Chapter 6), a careful distinction should be made between lying

(or deception) and concealing the truth. Ethically, there is a subtle but significant difference

between these two; in the words of a Chinese idiom, “an error the breadth of a single hair

can lead someone astray by a thousand miles”.

The principle of truthfulness should be breached only in exceptional circumstances, such as

when complete candour would lead to serious danger for the patient, such as confirmed risk

of suicide due to breaking bad news. For Confucian medical ethics the highest ideal is ren, as

articulated in the ethical definition of healing: “medicine as the art of humanity or

humaneness”. Nevertheless, the burden of proof should fall on those who believe that the

principle of open and direct disclosure should be breached in order to avoid perceived risks

to the patient. I have presented overwhelming evidence in this chapter that the great

majority of Chinese patients want information about their medical condition. And we have

seen that a conspiracy of silence or outright deception by family members and medical

professionals can do great harm to patients. So those cases in which the truth needs to be

concealed are likely to be rare. Cases where patients need to be deceived should be even

rarer.

Yet, while most Chinese patients would prefer to know the truth about their medical

condition, there is still a significant proportion of patients who prefer to be kept in ignorance

about their prognosis. This raises a moral question as well as a medical challenge. As

mentioned in Section 5, the short answer is that one should not impose the unpalatable truth

upon this group; and to ignore a patient’s wish not to know is as wrong as dismissing their

legitimate desire to know. From a cross-cultural perspective, patients who subscribe to the

“ignorance is bliss” mentality can be found not only in China but also in the West. On this

point, it is also worth pointing out that, as far as Confucianism is concerned, the concept of

cheng includes a criticism and even a condemnation of self-deception.

The radical level of disagreement revealed in the hospital survey results cited above

provides evidence of a genuine moral dilemma for contemporary Chinese: that is, as

discussed at the end of Section 5, what should be done when patients want to know the

truth about their condition but medical professionals and relatives prefer to withhold

information and even lie to them? According to the Golden Rule in Confucianism, “Do not

impose on others what you do not wish for yourself,” medical professionals should not

obstruct the wish of patients in order to achieve what they believe to be in the best interest

of patients.

Placing the onus of disclosure on family members in cases of terminal illness, a practice

that is widespread in China and favourably endorsed by the advocates of the cultural

differences argument, raises additional ethical questions. For instance, is this really in the

The “Cultural Differences” Argument and Its

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patient’s best interests, or for the convenience of medical professionals? Telling patients

the truth about their serious condition is an art; however caring and experienced he or she

may be, no physician will be perfect at this. As the 1847 Code of Ethics of the American

Medical Association recommends, it is not ethically sound for physicians to delegate this

difficult task wholly to family members. Apart from their obvious lack of systematic

training in medicine and counselling, most importantly, lay relatives may lack the

necessary professional and personal distance often critical for imparting sensitive

information in an empathic way. Chinese medical professionals need to change their

practice on this. Shunning a professional duty merely because of its difficulty is

unacceptable, ethically and professionally. If the real motivation for “familist” practice is

simply the convenience of medical professionals, then the practice clearly needs reform.

For Chinese medical practitioners, the basic requirement of the Confucian medical ideal,

“medicine as the art of humanity”, is to fulfil their professional duties, however

challenging they may be.

9. The tyranny of culture vs. the primacy of morality

Respecting perceived cultural differences constitutes a major ethical stumbling block to

implementing the practice of direct and truthful medical disclosure in non-Western

societies (and non-European groups within Western countries). By this logic, the current

mainstream cultural practice is proffered as a sufficient ethical rationale to reject medical

truth-telling. In other words, the “cultural difference” proponents attempt to bypass the

moral difficulties involved by substituting statements about cultural practices for serious

ethical examination. In this age of Western cultural hegemony, it is extremely important

to respect different cultural practices, especially non-Western ones. However, an ethical

dilemma arises when cultural practices conflict with moral imperatives. The cultural

difference argument privileges cultural practices over ethical mandates; it implies, if not

holds, that whatever is culturally authentic is automatically ethically defensible. This

tyranny of culture over ethics can easily lead to moral relativism and even ethical

nihilism. According to the logic of the cultural difference view, slavery in human history;

gender discrimination and many other forms of discrimination, which are found in almost

all human societies; the West’s colonization of the non-Western world; the Third Reich in

Germany; and foot-binding in Chinese history – to list just a few examples – are all

ethically justifiable because all these practices were or still are culturally genuine and even

unique.

More crucially, respecting cultural norms and practices can actually work against the

fundamental values of a given culture and society. For both Confucianism and Daoism, the

two major indigenous Chinese moral and political traditions, it is not existing cultural

practices that should be privileged, but whatever is morally right. For Confucianism and

Daoism, the most fundamental value is precisely the primacy of ethics and morality over

existing social and cultural practices, rather than the other way around. The moral

imperative of the Dao (Tao, literally “the Way”) or the Tianming (the mandate of Heaven) is

superior to the claims of any cultural and social practices, whether Western or Eastern. The

basic task and highest calling of ethics is, first of all, to identify which socio-cultural

practices are morally justifiable and which are not.

Bioethics in the 21st Century

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10. Conclusion

Taking a universalist ethical position on human rights and patients’ rights, other bioethicists

have forcefully argued the importance of truth-telling and informed consent internationally,

in China as well (Macklin 1999). This may be seen as a kind of outside perspective. In this

paper, my stance is from the inside out.

My aim is not to dispute the existence of widely acknowledged cultural differences in China

and the West regarding medical truth-telling. Rather, the key question for me is how this

prima facie cultural difference—direct disclosure vs. non-disclosure or indirect disclosure—should be

interpreted historically, sociologically and ethically. In particular, I have demonstrated that,

despite its popularity and apparent plausibility, the cultural differences argument against

medical truth-telling in China is seriously flawed at both the descriptive and normative

levels. It has oversimplified and distorted both the historical and socio-cultural realities,

including the role of family, in both China and the West. It has mis-presented and mis-

interpreted the standpoints of such major Chinese traditions as Confucianism on the subject.

Historically, it has ignored the venerable Chinese tradition of direct truth-telling and,

sociologically, it has dismissed the wishes of the great majority of Chinese patients who

want to know the truth about their prospects. Ethically, it has obscured critical moral

problems involved in nondisclosure and deception by medical professionals, and it

promotes the tyranny of existing socio-cultural practices over ethics and acceptable

morality.

Therefore, the contemporary Chinese practice of concealing the truth and even lying to

patients about their terminal illness, no matter how widespread, ought to be critically

examined, vigorously challenged, and systematically reformed. Culturally, the shift toward

honest and direct disclosure now occurring in China is not so much –or at least not just-

following a Western pathway, but constitutes a return to a neglected indigenous tradition (for

a detailed discussion of this forgotten Chinese tradition, see Nie 2011, Chapter 6). More

importantly, even if it were proven to be culturally alien to China as universally assumed, the

norm of truth-telling should be instituted on the basis of the ethical imperatives presented in

this paper.

As for cross-cultural bioethics, if I have appeared to argue that all cultures are

fundamentally the same and that cultural differences do not matter, I would like to say

that this is not my intention. My point is that Chinese and Western cultures are different,

but not in the ways suggested by popular stereotypes, not in the sense of their being

“radical others” to one another. As this study of medical truth-telling in China and other

research projects have illustrated, Chinese-Western cultural differences are far more

complicated, subtle, intriguing – and thus more difficult to grasp and articulate – than

facile overgeneralizations. Rather than being homogenous and static, Chinese culture, like

any other human culture, has always been internally heterogeneous, full of contradictory

elements, changing over time, influenced by and borrowing elements from foreign

cultures, open to new possibilities, and subject to ethical scrutiny and developing moral

ideals. The complexity of cultural differences as indicated in medical truth-telling in

China in comparison with the West calls for a more adequate cross-cultural bioethics or a

“transcultural bioethics”: an ethics that resists cultural stereotypes, cherishes the common

humanity, upholds the primacy of morality, and acknowledges the richness, internal

diversity, dynamism and openness of medical ethics in every culture, whether in China,

The “Cultural Differences” Argument and Its

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117

the West or elsewhere (for these general points, see Nie 2005, 2007, 2009, and especially

2011).

11. A Personal note

I would like to end this paper on a personal note. In the late 1980s, the father of a former

medical school classmate and good friend of mine was suffering the final stages of lung

cancer. A psychiatrist himself, without any knowledge of the new practice of disclosure in

the West, my friend informed his father of the diagnosis and prognosis – something his

father’s doctors and nurses never did. In taking this step, my friend set out bravely in

defiance of the dominant social and medical norm of nondisclosure, and unknowingly

travelled a way that ancient Chinese medical sages had walked more than twenty

centuries ago. At the time, I should have questioned him further about his courageous

decision to choose this unorthodox route. But our discussions were kept brief – after all, it

is never easy to talk about the death of a loved one. Now it has become impossible for me

to continue the dialogue. Having just celebrated his 31th birthday, and when working as a

visiting physician in Japan in 1994, my friend was hit by a car while riding a bicycle and

died from his injuries.

This paper is humbly dedicated to Dr Zou Xinxin (1963-1994), a brilliant physician and

friend. If only I could have had the benefit of his endorsement and criticism.

12. Acknowledgements

The expanded version of this chapter will be included in my forthcoming book, Medical

Ethics in China: A Transcultural Interpretation, to be published by Routledge. This work is a

part of a larger research project on medical ethics in China, financially supported by a

University of Otago Research Grant. I am very grateful to Li Hongwen in Beijing for his

research assistance in search of Chinese materials and Dr Paul Sorrell in Dunedin for his

professional editing. Parts of materials have been presented as invited speeches at the 7th

Beijing Forum, at a symposium organized by Giuliana Fuscaldo, Lynn Gillam and Sarah

Russell for the 10th World Congress of Bioethics, and at the second seminar of the New

Zealand Ministry of Health Pacific Health Leadership. I gratefully acknowledge the

organizers and the audiences of these events for their interest in my work and for their

helpful questions and comments.

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Nanotechnology and Ethics:

Assessing the Unforeseeable

Monique Pyrrho

University of Brasília

Brazil

1. Introduction

Nanotechnology is not in consensus. The attempts to answer the question “what is

nanotechnology?” are usually inaccurate, and the responses to it, far from being unanimous.

There has always been controversy, from defining its conception to establishing the limits of

the so-called nanoscience subject, as well as its effects and viability. One of the few points of

consensus among scientists is that manipulation of materials at the atomic level may unfold

new properties.

The emerging nanotechnology brings great excitement due to its technological potential. In

order to analyze its possible ethical implications, the task of starting from the beginning, of

introducing the theme from the concept of the object of study itself, imposes the first and

fundamental obstacle for those who intend to reflect about the ethical approach of

nanoscience and nanotechnology.

This initial challenge comes from the differences found between what each group that uses

the term nanotechnology intends to mean. The objects of study, nanoscience and

nanotechnology do not seem to be consensually organized. In general, researchers and

scientists tend to describe nanotechnology from a perspective of their own activities

(Petersen & Anderson, 2007).

The prefix nano, derived from the Greek “dwarf”, refers to the tiny size of the particles. In

scientific terms, it means a part per billion; therefore, a nanometer (nm) corresponds to a

billionth of a meter (10-9). To illustrate the reduced scale in which nanotechnology works,

the smallest point seen by a human naked eye is about 10,000 nm, while 1 nanometer

corresponds to 10 times the diameter of a hydrogen atom (Medeiros et al., 2006).

Under such perspective, it is possible to understand nanoscience as the field of knowledge

that studies the fundamental principles of molecules and structures (sized between 1 to 10

nanometers in at least one dimension) called nanostructures. Nanotechnology, in turn, is the

application of these nanostructures in functional nanoscale devices.

However, even according to the official definitions by the National Science Foundation

(2000), nanotechnology does not have a clear concept. The NSF defines it as the research and

technology developed from new properties as a result of matter manipulation on a

nanoscale level – between 1 and 100 nm. However, the same properties can be occasionally

found in dimensions below 1 nm and above 100 nm.

Nowadays, the manipulation of objects and devices on that scale is common to almost all

new fields of experimental science. The difficulty in establishing what is and what is not

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nanotechnology has important epistemological and ethical consequences (Ferrari, 2010). The

ambiguous nature of such concept results in laboratories claiming that their researches must

be added the prefix “nano”, along with all resources and prestige it brings. The undefined

limits of this new techno-scientific movement influence the debate on its potential and its

consequences.

Nanotechnology is expected to advance almost all current technological industry branches

such as. Literature approaches an expectation of progress in computer science, micro and

nanoelectronics, cosmetic and textile industry, energy production and storage,

telecommunications, chemical and petrochemical industries, agriculture and agribusiness,

automobile industry, aeronautics and, of course, arms industry (Invernizzi, 2008).

As far as healthcare is concerned, nanotechnology shows one of its most promising

announcing revolutionary scientific and technological progress that might deeply affect

the way we deal with health and medicine in the near future. In the new field of

nanomedicine, devices and nanostructured materials are expected to be applied to

monitor, repair, build and control human biological systems (Sahoo et al., 2007). There are

countless possibilities: controlled release of therapeutic agents, production of active

ingredients, medical imaging, lab diagnoses, biomaterial production and implants, and

more (Wagner et al., 2006).

The great promises in nanotechnology are not new. The fact that many laboratories are

investing more and more in research shows more than a resemblance between

nanotechnology and the latest great advances in biotechnology.

Before the promising scientific advances and their impacts come, major social groups have

not waited to express their positions on nanotechnology and society. The media, scientists,

policymakers and sectors of society have promptly set out their stances, with the

justification that scientific changes require urgency in decision-making. A hasty scenario of

extreme positions has been set up. However, the shape of this innovation demands balanced

reflection rather than taking unconditional sides on the use or ban of nanotechnology, or

definitively halting it, or waiting for it to eventually happen. At this initial stage, therefore, it

is opportune to propose a prior discussion that is broader than foreknowledge and

assessment of the unforeseeable beneficial effects or risks.

As the establishment of the topics for discussion already seems to be difficult strategies

other than discussing risks that cannot be fully foreseen and assessed are strongly

suggested. This is how this topic will be brought up and developed here.

The first challenge regards the different appropriations of vocabulary and the diversity of

devices and techniques used in the various fields of research. This leads to the notion that

nanotechnology is not a single entity to which a single value judgment can be attributed.

Actually, one should consider not one, but many nanotechnologies. Thus, it would be

extremely difficult and also inappropriate to propose a comprehensive stance for all the

fields and products involved.

In different scenarios, the term “nanotechnology” can have a different interpretation,

eventually being used for different objectives, leading to different consequences. There are

some who even question the innovative nature of nanotechnology , grouping it with other

fields of biotechnology. This attitude may diminish the hype around this so-called

innovation; however, it also points to the need to analyze the various objectives and

definitions upon which the debate is based (Ferrari, 2010).

Consequently, instead of mainly establishing concepts and discussing the possible risks

related to the use of nanotechnology products, this is a longer and not so explored path.

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First of all, there are some important reference points regarding this scientific phenomenon

to be defined. Also, innovations in relation to previous biotechnological-scientific advances

must be identified, and the degree to which they demand specific debate on their ethics

must be assessed.

2. What is new?

In at least one respect, nanotechnology represents something fairly new among technical-

scientific revolutions: the ethical implications of its possible discoveries have become a cause

for concern even before the discoveries themselves have been made. Indeed, more than the

technological advances themselves, what is most innovative in nanotechnology is the very

discussion of its ethics, which is taking place at the same time as or before the scientific

events on which it focuses. Long before scientists could explore the manipulation and

shaping of compounds at atomic and molecular levels, it was the expectation of the

transformation of our relationship with the world, of delving so deeply into the structure of

matter, which motivated the visionary Feynman (1961) in the first references to the theme.

Possible repercussions precede and obscure the actual facts. Debates regarding the possible

transformation of the world, and of humans into post-humans, take place before the basic

science has been established. Apocalyptic scenarios are depicted even before methods and

procedures for nanotechnology can be clearly established (admittedly, this is not unlike

some genetics).

Therefore, according to Schummer (2007), the technological exploration of nanoscale

properties is not the real innovation. He states that the innovative aspect lies in how

nanotechnology and the way it is depicted reflect the connections between society, science

and technology. This innovation affects pre-established boundaries between living and non-

living things, the natural and the artificial.

It is significant that a debate on ethical implications is taking place before the scientific

advances themselves have actually taken place. An ethical approach, rather than an attempt

to explore science fiction, could perhaps state that nanoscience, its structures and scientific

approaches, represent a characteristic rupture between new paradigms and the classical

scientific model.

Innovations frequently disrupt established moral standpoints, bringing discomfort or a

conflict between customs and the new reality that is imposed, and requiring further

discussion. Moreover, dealing with novelty brings, to some degree, an urge

to explore the paths of the unknown which cannot easily be foreseen (Swierstra & Rip,

2007).

In the case of nanotechnology it is characterized not by the size of the particles it deals with

but by the new and unknown chemical and physical properties that derive from their size

(Ratner & Ratner, 2003). The great attraction of working on a nanoscale lies in new and

unusual physical and chemical properties that are not found in the same materials at micro

and macroscopic dimensions. It is therefore unrealistic to expect to know all the possibilities

for their use and to foresee their consequences. The specific characteristics of the nanometric

dimension diverge from the physicochemical laws that determine the behavior of materials

at “normal” macroscopic scales.

3. The scientific paradigm and its implications

Given that nanoscience is based on the diverse and unpredicted behaviour of materials

manipulated on a nanoscale, the unknown and the unforeseen are central to it. Scientific

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knowledge, insufficient in itself to provide moral solutions, is also revealed to be incapable

of providing sufficiently reliable information to enable proper reflection on the health-

related, ecological, ethical and social impacts of nanotechnology.

The literature on nanotechnology and ethics is incipient in comparison with what has been

produced internationally regarding its techno-scientific aspects. However, it is noticeable

that the ethical implications that have been identified, and the solutions that have been

proposed, vary in accordance with the writer’s individual perspective on scientific activity.

There is a tendency for scientists to have an inward-looking perspective that describes

scientific activity on the basis of its methods and technical results, in this case producing

what one might call a scientific image of nanotechnology. The ethical discourse arising from

this image emphasizes ethical implications closely connected to the direct consequences of

the applications of nanotechnology.

With regard to practical questions regarding health and the expected use of nanomedicine,

the ethical issues arising from the applications of nanotechnology are too numerous and

complex to be addressed satisfactorily by scientists alone.

If, in the past, the analysis by scientists of ethical issues surrounding technological advances

proved to be limited, and sometimes biased, a new science that reveals epistemological

ruptures with the fundamental scientific characteristics of reproduction and predictability

would appear to present an even more complex subject for analysis.

Another factor to be taken into consideration is that much of the scientific media defines

nanoscience not on the basis of its conceptual reference points or properties but in raltion to

expectations surrounding its applications. Nanoscience essentially becomes the expectations

that are placed upon it, the things it is deemed to promise. This discourse becomes an

apology for scientific progress, instead clarifying any specific aspect of nanotechnology

(Swierstra & Rip, 2007). Made the object either of huge optimism or huge pessimism,

nanotechnology is depicted either as the future solution to world health problems or the

future cause of a great ecological disaster. From such a perspective a sensible assessment is

impossible.

A new ethical approach is necessary; an approach that uses the language of this new

scientific paradigm. It is especially important to know how to engage in dialogue about a

science based on the unforeseeable and the unknown.

This ethical debate on nanotechnology highlights the oscillation between the

consequentialist and deontological approach, well known in bioethics. The relevance of the

consequentialist approach is clear, due to the central role of risk analysis of nanoparticles in

this debate (Ferrari, 2010). This is completely understandable since this kind of analysis is

necessary in order to guide political and ethical regulation, but it needs to be based on

scientific evidence, which is especially problematic in nanotechnology (Shrader-Frechette K,

2007). The discourses on risks become important, partly because current mechanisms for

regulation and control are insufficient, sometimes even inadequate, to address the uncertain,

unpredictable aspects of this field (Grunwald, 2005).

Those who intend to establish their ethical approach only by studying impacts and detailed

risk analyses based on thorough knowledge of technical possibilities, find themselves

thwarted. Such failure occurs primarily because scientists’ parameters for risks diverge from

the perception of such risks within society (Slovic, 1987). The public perception is that

biotechnological advances bring unknown risks that may take time to become apparent or

may not be fully observable. It is generally opposed to the scientific discourse based on

calculations of risks and benefits. But such calculation is not yet possible (and might never

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be), as the risks and benefits are not yet well known (Savadori et al., 2004). The principle of

precaution is frequently presented as a solution to the difficulty of predicting the direction

of scientific development. It is seen as a guideline for decisions under uncertain conditions.

It is assumed that negative effects are known, but it is impossible to measure risks due to a

lack of data (Ferrari, 2010).

Not only is it impossible to measure the risks presented by nanotechnology but even its

effects are unpredictable. This is because nanotechnology involves a new epistemic scenario,

the inherent basis of which is uncertainty and ignorance (Stirling, 2007). Decision making in

nanotechnology, therefore, is additionally complex because of its epistemic nature, as well

as other factors such as the wide variety of its applications (Rip, 2006). Consequently, the

precautions taken against unknown risks are not successful in practical life and its

interactions with the market. The parameters of the analysis therefore need to be revised.

The subject has to be analyzed on an interdisciplinary basis, taking into consideration the

complexity of the relationships between many levels of reality, and thus encompassing both

scientific and social phenomena (Victoriano, 2006). An increasing number of authors

criticize risk analysis as the only approach in debates on the ethics of nanotechnology. They

suggest that ethical reflections should go beyond risks and benefits to also address the way

science is performed, including its objectives and methods. These would be more complete

approaches, taking into account issues such as intellectual property, public opinion, and

future generations (Ferrari, 2010).

In recent years, especially in Europe, there has been an increasing number of initiatives

calling for a more representative inclusion of public opinion in debates on the control and

management of new technologies. This movement grew stronger in the wake of negative

reactions to foods derived from genetically modified organisms. Such initiatives aim to re-

establish trust in science, establish political innovations, avoid adverse reactions,

democratize the governance of new technologies, and promote more responsible, reliable

scientific practices. However, public engagement can be hampered by many factors: a lack

of awareness of what nanotechnology really entails; the future-oriented and promissory

character of nanotechnology, which gives a special role to science fiction in shaping the

moral imagination of nanoscientists and nanotechnology policy itself; and the very

strangeness of nanotechnology in relation to daily life, introducing a dimension that is not

well be understood or even perceived. In addition, the conceptions or discourses that guide

and define the development of nanotech science, though crucial, vary between the many

branches of nanotechnology and different cultural scenarios. Such disharmony makes it

necessary to analyze those discourses with the aim of making possible genuine public

participation. (Macnaghten, 2010).

An ethical approach, therefore, would mean that nanotechnology is part of a cultural

scenario, simultaneously defining and being defined by it. In this way the issue of the

different perceptions of the sciences, and the discourses and expectations that surround

them, take on great importance, since the way the future is described influences the way it

turns out to be. The ethical approach, therefore, needs to be applied to other levels,

overcoming precaution and the search for consequences in order to understand science as a

thorough phenomenon, in all scientific, cultural, economic and political dimensions (Dupuy

& Grinbaum, 2004). Reductionism is no longer acceptable.

One of the possibilities is to understand nanoscience and nanotechnology, with their

promising results and unforeseen risks, within a broader context, such as a practical

segment of a new scientific paradigm based on its ability to control and manipulate matter

at atomic and molecular scales (Kearnes & Macnaghten, 2006).

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Kuhn (1962), in The Structure of Scientific Revolutions, described the evolution of modern

science and defined scientific paradigms as the successive models on which scientific

theories were based. Normal science would mean research based on scientific

accomplishments recognized, for a while, as the basis for subsequent practice. Normal

science, therefore, would be based on paradigms, i.e. models that structure and order the

current stock of scientific knowledge, thereby determining the methods and subjects for

study. Paradigms are therefore the basis of normal science, which is generally developed to

state and confirm common theories and concepts among scientists.

In the case of the broad field of nanoscience, the paradigm previously applied was known as

Newtonian Mechanics. It originated from the Cartesian hypothesis, which in some aspects it

advanced and completed, and describes the interactions of macroscopic bodies. The

scientific revolution from which the next paradigm will emerge may be structured from

current normal science. Therefore normal research, following the Cartesian scientific model

for analysis, study and synthesis, has influenced the study of bodies and interactions. The

attempts to apply the current paradigm to miniaturization may have brought about its very

specific crisis.

The attempts to verify a theoretical paradigm, i.e. the ultimate goal of ‘normal science’, have

detected imperfections and incoherence between theory and phenomena (Kuhn, 1962). The

search for the ultimate explanation of the universal law that governs all bodies in their

smallest units is halted due to its great divergence from the macroscopic world. At the

atomic or molecular level, the laws governing interactions are related to the wave nature of

electrons and the frequency and wavelength of their vibrations. Unlike the phenomena

predicted by classic scientific theory, the concern of quantum physics is the observation of

behavior on a nanometric scale (Ratner & Ratner, 2003).

The appropriation of the scientific paradigm extends beyond the changing of the physical

science paradigm. Nanotechnology represents the “convergence of quantum physics,

molecular biology, computing science, chemistry and engineering” (Mehta, 2002), and

therefore differs from Cartesian scientific knowledge. Whereas the latter seeks

specialization, nanotechnology results from a convergence of interdisciplinary concepts,

allowing interactions between methods, applications and theoretical foundations in

different fields of expertise (Garrafa, 2006).

Such a scenario is close to the current complex scientific paradigms in which interactions

transcend conventional divisions between sciences, humanities and biomedicine.

Nanoscience thus diverges from the scientific method in which the production of

knowledge is based on analysis. Such object-oriented analysis, within scientific practice,

has resulted in a disconnection between human sciences and natural sciences (Morin,

1988).

Morin (1988) stated that such a disconnection made it impossible to observe the complex

nature of the world, reducing reality to “mathematized” rules and laws that would appear

to explain the world perfectly by ignoring unforeseen events or facing them as errors.

Reality was seen as the sum of observable phenomena, not taking into consideration the

possible overlaps between science and philosophy or between human and biological

sciences (Morin, 2008).

Starting from a perception of realities in their full complexity, new technology and a new

scientific paradigm have practical implications which go beyond the limits of their original

subjects. This complex thinking is illustrated as a network that seeks to analyze the possible

interactions between many levels of reality and the repercussions of events. Also, this new

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thinking includes an awareness that unforeseen events are characteristic of the phenomena;

they are not just the result of errors, and are not to be disregarded (Morin, 1988).

From the viewpoint of complexity, the rupture between ecology and sociology, in which

scientific analysis has as its object the environment without man and man outside his

environment, is artificial and ethnocentric. An analysis of the possible consequences of

nanotechnology should, therefore, avoid disconnecting these dimensions (Victoriano, 2006).

This is vitally important for a proper analysis of the actual influences and the distribution of

social benefits brought about by the minimization of energy and materials required in the

nanotechnology industry (Schnaiberg, 2006).

New paradigms generally emerge as more suitable responses to questions unanswered by

previous paradigms. They enable scientists to explain a greater number of phenomena or to

increase the accuracy of their existing explanations. For this reason the application of new

technologies may be controversial, because they might seem to offer a theoretical solution to

the world’s problems, and because they unveil a set of unknown phenomena that might be

greeted with disbelief or sometimes even panic (Kuhn, 1962).

Nanotechnology is paradigmatic in this sense. Sometimes it is portrayed as a revolutionary

technology that will change the way we live through its effects on industry, communications

and information technology. It would appear to expand the boundaries of medicine,

promising less invasive, more effective surgery, more specific medications, treatments for

incurable diseases such as cancer, and even the possibility of improvements in cognition and

memory processes (Freitas, 2005).

On the other hand, the current lack of knowledge regarding the potential scope of

nanotechnology provokes extreme reactions that tend to emphasize environmental risks and

profound transformations in our way of life. One example is the debate on the so-called

“grey goo”, a scenario where self-replicating nanoscale devices called nanobots would rule

the world. Out of human control, they would eventually eliminate our species from the

planet (Drexler, 2004).

The advances within nanotechnology have led to debates on the ethical implications of its

applications. The ethical issues discussed have included equity, benefit distribution, access

to scientific advances, environmental impact (the use of new materials, and of new

properties of previously-known materials, might make them insoluble or turn them into

pollutants), implications for privacy and security (invisible surveillance equipment, and

infinite possibilities for the arms industry), modification of the constitution of living entities

(genetically modified organisms), and self-replicating devices (Salvarezza, 2003).

In its methods and in the way it is conceived, managed and practiced, the new scientific

paradigm of nanotechnology represents a rupture with the existing scientific model. The

current academic scientific model, conceived in 18th-century Europe, especially in French

and German universities, has been undergoing profound transformations. Post-academic

science shares the objectives of the previous model – the production of knowledge in

accordance with epistemic norms, scientific laws, and values – and yet differs from it in at

least three aspects: how knowledge is produced (focusing on transdisciplinarity); how

knowledge is assessed (for its economic potentials); and the great emphasis on the

application of that knowledge, or in other words, the fact that knowledge is produced so as

to serve certain technological purposes (Jotterand, 2005).

The common perception of nanotechnology as a revolution is therefore understandable.

Nanotechnology not only entails epistemic rupture, as did the other scientific revolutions

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before it, but introduces new laws and structures of knowledge, or new cognitive categories.

Changing the way categories are explained brings changes to the way we experience the

world.

Nanotechnology, however, is more than a scientific revolution; it is probably a techno-

scientific revolution, because it focuses not on the properties of matter but on its

manipulation and transformation.

Therefore, in a way that is quite revolutionary, neither the concept of science nor the concept

of technology can perfectly describe the know-how of nanotechnology. Nordmann (2004)

states that nanoscience is not structured from a topic but set to a goal. It is not aimed at

manifestations of nature, machines, or substances with new properties. Its epistemic

effectiveness is not measured based on its devices and the functions of substances. Actually,

nanoscience is an attempt to explore an inhospitable territory and to colonize a new world,

or an as-yet unexplored area of the world. Epistemic success is now a technical

accomplishment; the ability to act in nanoscale scenarios, to see, to move things, to carve a

word in a molecule. This means that nanoscience is not traditional "science" per se, and that

there is no distinction between its theoretical manifestation and its technical intervention, or

between the understanding of nature and its transformation. From now on, therefore, it

would be more appropriate for the debate to be focused on nanotechnoscience.

This particular scenario of technoscientific revolution does not only establish

nanotechnology’s scientific and technological development, but also influences the

development of moral reflections on the social and ethical implications of nanotechnology.

The technoscientific revolution brought about by nanotechnoscience is a broader post-

academic scientific movement in which science, technology, politics and economics have

convergent social purposes. These relationships allow greater integration between ethical

and philosophical reflections and scientific practice within the post-academic context, due to

its cross-disciplinary nature and to the increasing political and social pressure on the process

of scientific knowledge production (Jotterand, 2005).

Sotolongo (2006) pointed out two important ethical issues that require closer attention, both

relate to the current type of science exemplified in nanoscience. First, due to humans’ great

capacity to intervene in natural phenomena, and unprecedented capacity to interact with

and manipulate matter and energy, our physical and intellectual abilities can be enhanced

through autonomous integrated systems. The closer science comes to controlling

environmental conditions, the closer it gets to potential powers of destruction. The second

issue is the huge extent of the knowledge acquired, which makes it impossible to identify all

the possible uses and practical interactions of the resulting technologies. As far as natural

and social complexity is concerned, not all the practical implications can be known,

predicted or manipulated: on the contrary, there is an inherent uncertainty in the

implications.

Although many adverse results can be expected in relation to nanotechnology, not restricted

to the immediate threat of nanotoxicity to humans, it is a cause for concern that so few

studies of its ethical, environmental, political and social implications have been carried out.

Even though there was reflection on its potential impacts before nanotechnology entered

scientific practice, the fast growth of research in its technical and scientific aspects over

recent years contrasts with the lack of investment and scientific production with regard to

its ethical and social aspects. Indeed, there has been an increasing distance between the

expanding technical-scientific knowledge and the required socio-political and philosophical

reflections (Mnyusiwalla et al., 2003).

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The convergence of effort and investment in the technical fields is clearly related to the

social representation of science: the cultural phenomenon in which interpretive science,

which seeks meanings, loses out to empirical science, which seeks laws and rules (Franklin,

1995).

Faced with the innovation and the amount of challenges posed by the ethical debate on

nanotechnology, there are those who propose nanoethics, a subject that would be devoted

exclusively to the analysis of these challenges. However, immediate questions arise about

whether an area of ethical study devoted exclusively to nanotechnology is really

necessary. Consequently, comparisons between bioethics and nanoethics are frequently

made. Nanotechnology does not demand a genuinely new ethical approach but instead an

approach that is different and renewed in relation repertoire of the previous ones.

Therefore, instead of declaring that these questions have already been asked and that

there is nothing new in nanotechnology, it can be pointed out that if the questions are the

same ones as before, it is because they have not yet been answered. It is worthwhile to

pose those same questions again, for they might help to elucidate the phenomenon

(Khushf, 2007).

The same answers and methods that did not completely illustrate the analyzed phenomenon

are dispensable, therefore, but not the ethical concern itself. As previously suggested, the

development of nanotechnology casts doubt on whether risk assessments and other

analyses that are commonly used will nowadays suffice when it comes to evaluating

nanotechnology. Although traditional ethical approaches can be appropriate for some

subjects, nanotechnoscience has social and ethical implications of such magnitude that it

necessitates the development of alternative approaches that can provide conditions for the

development of nanotechnology (Meaney, 2006).

Therefore, whether proceeding from the perspective of nanoethics or from that of other

disciplines, the discussion regarding the ethical implications of nanotechnology reveals that

the questions do not arise only from within the social sciences: the scientists start to question

their own practices.

Despite manifesting this initial interest in reflecting upon their practices, the discourses of

natural science and social sciences are not the same. This is due especially to two factors.

First, following the events of World War II, scientists acquired a greater sensitivity to their

technological impacts. This sensibility focuses mainly on the impact of devices,

concentrating concerns on environmental and health issues. Another factor that sets their

discourses apart is the different readership for natural science articles when compared with

the social sciences and humanities.

4. Some ethical approaches: A typology

The purpose of setting the scenario in which nanotechnology has been established is to

show how the concepts of nanotechnology and the corresponding moral considerations of

the different actors, including scientists, are heterogeneous. The proposed approach,

therefore, starts from this initial effort to identify the concepts, their origins and their effects

(Kaiser, 2006).

Aiming to avoid the dualism that is so prevalent nowadays, Kaiser (2006) suggested that the

strategy for avoiding utopia or dystopia in the debate was to adopt an observational stance,

rather than viewing ethics from a participative perspective. According to him, it would not

be necessary to define nanotechnology, given its uncertain and unpredictable nature, in

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order to conduct a debate on it. The strategy suggested would be to stand back from the

topic and observe the scenario within which the actors construct their perspectives on and

concepts of nanotechnology, in order, to guide the ethical analysis.

Grunwald (2005), for instance, argues that the innovative character of nanotechnology is

being overestimated and that the ethical analysis should focus on the various

representations that underlie the discussion. It is not the nanoscale and its processes that

have ethical and social consequences. Ethical reflection should embrace science as part of

human relationships, with their images, significances and expectations.

Accordingly, to understand technologies in order to develop an appropriate ethical

approach, it is necessary to have explored in detail the universe of visions, images, ideas and

representations of nature, and of the human being embedded in the discussion (Ferrari,

2010). This perspective relates to the argument of the philosopher Karl Popper, who states

that every scientific theory is based on a set of values and world views. Roughly speaking,

those world views make up what he calls a Metaphysical Research Program. They are not

susceptible to direct empirical testing and are not falsifiable, and do not properly constitute

scientific knowledge, but they determine which problems, investigation methods and

solutions are considered scientifically (Popper, 2009).

Dupuy (2006) states that in nanotechnology, as in other convergence technologies, the

Metaphysical Research Program is characterized by a lack of distinction between knowing

and doing. Such similarity, which seems to reach its peak in nanotechnology, is illustrated

precisely by the instruments that make it technically possible.

In 1981, the Scanning Tunneling Microscope was developed. Through a very thin tip and a

voltage bias, it allowed atomic dimensions and dispositions to be analyzed, and it was later

discovered that this same instrument, with a small modification, was capable of

manipulating and repositioning atoms very accurately (Cao, 2006).

Dupuy (2006) argues that the Metaphysical Research Program goes beyond this very

explanatory metaphor of the microscope. Nanotechnology would make possible the

engineering of evolution, enabling man to be the designer in the production of life.

According to Dupuy, a project of such magnitude could not be analyzed using pre-

established ethical doctrines. A new ethical challenge requires a meticulous exercise of

unveiling the conceptions, ideas and images on which the scientific theory is based, so as to

then proceed to a critical analysis or a normative judgment of the technological progress.

In reply to the question "what is science?" different answers are given, but all of them are

always set in a certain context. The different forms of interpreting this question give birth to

at least two different images of science.

Dealing with different representations of science, Olivé (2006) stated that both the “scientific

image” and the “philosophical image” of science are derived from the question “What is

science?”. While the “scientific image” is usually the way in which scientists describe their

own activities, the “philosophical image” seeks to characterize scientific production within

the contexts provided.

The “scientific image” is to describes scientific facts and elucidates the rules governing

patterns, without concern for the social criticism of its own process of knowledge

construction (Franklin, 1995). The “philosophical image” studies the history, sociology and

philosophy of science and relates scientific activities to social practices and institutions, to

the conditions for the development of science, and to the mutual repercussions of society

and science (Olivé, 2006).

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It is not specifically the dimension of the nanoparticles, therefore, that is important for

studies and consequent debates on the interactions between technology and society. The

analysis depends on the views of nanotechnology held by the different actors. What matters

is the transformation after human interference, and not the nanometric dimension in itself,

given that such a dimension is found in nature regardless of the intervention by human

devices. It is emphasized, however, that no intrinsic moral value is derived from human

intervention. Whether or not one carbon compound is nanostructured does not make it

ethically superior to another. It is in the relations between men, in society, and as part of the

natural environment, that the products and their uses will be revealed as more or less

adequate.

Some of the ethical implications therefore seem to be clearly demonstrated, such as in the

example of a compound that is toxic or pollutes. Other ethical challenges become clear only

within complex social interactions, such as the repercussions for the global economy and the

social inequality resulting from the introduction and appropriation of nanotechnologies by

the market.

Assuming that the ethical approach towards nanotechnology starts from the paradigmatic

unpredictability of this technical-scientific phenomenon, a schematic consideration of the

possible questions is put forward here. The dilemmas resulting from the interaction between

a new scientific paradigm and the complex overall social dynamics, together with the image

of nanoscience on which the ethical perspective is based, produce a classification scheme for

the implications of nanotechnology that has two categories: autogenous (internal) and

heterogeneous (external) (Pyrrho, 2008).

4.1 Autogenous ethical implications

Nanotechnologies are characteristically improvement technologies, which is to say that like

many convergence technologies, they refine and improve tools and materials that will be

used in other fields. They not only change the existing components and devices but also

develop new ones. This is the aspect most closely related to scientifically observable

consequences, which sometimes have considerable implications. Although nanoparticles

are not present-day inventions, the capacity to structure them systematically for the

industrial exploitation of their properties is certainly new. Products developed this way for

sporting, nutritive, automotive, cosmetic, information technological and many other

purposes are now available on the market. This production on an industrial scale is critical

because it may cause significant damage to the environment, to workers, and to the large

populations that are eager for technological goods.

The partial lack of knowledge about the properties of the materials goes together with the

way in which the national and international regulatory bodies lag behind: the regulations

take the chemical composition of the components into account but not their conformation.

For example, it is possible for a new nanostructured component to arrive on the

pharmaceutical market without undergoing new toxicity tests, even though the reactions

within the organism may be completely different.

Such developments are usually accompanied by biased arguments characterized by an

assumption that the application of nanotechnology is inevitable, a fascination regarding

its implementation, and a reduction of the ethical debate to the analysis of toxicological

and environmental risks. The perspective of those making such arguments is that the

benefits from research are usually derived more or less automatically, that any negative

effects can be attributed to mistakes on the part of others, and that it is impossible to

Bioethics in the 21st Century

132

predict how technology will be used once it has been developed (Ferrari, 2010). This

perspective clearly attributes moral neutrality to science. Risks and negative effects are

external to the scientific activity, so it cannot be responsible for them. This view also

produces a common perspective in bioethical discourse – the search for technical solutions

for moral problems.

According to Schummer (2004), three different understandings of the “social and ethical

implications of nanotechnology” stand out among scientists. Computer sciences researchers

associate these implications with radical changes in society, in which everything is possible

with software programming. Natural science researchers seem to hold a more modest but

still visionary position about industrial revolutions and other deep changes, as in

biomedical practices that related to nanotechnology. For toxicologists and

environmentalists, meanwhile, the ethical and social implications represent risks for health

and for the environment.

Despite the common ignorance regarding nanotechnology and its risks, the scientific

image seems to result in a positive perspective on the impacts of nanotechnology. In

another study, based on interviews with researchers, many of the interviewees

emphasized the difficulty in analyzing the risks due to the lack of research and

knowledge regarding important aspects of the nanomaterials. They pointed out

difficulties in foreseeing the behavior of the particles in certain environments, the little

investment in risk analyses, and uncertainty regarding current methods of risk analysis

for the nanoparticles. They described nanoscience as currently going through a latency

period between the introduction of the technologies and the evaluation of the adverse

effects. They still took the view, however, that nanotechnology is positive for society

(Petersen & Anderson, 2007).

The autogenous ethical implications were not highlighted because of an understanding that

they are intrinsic to nanotechnology. Such a view could erroneously put value on the

applications of this technology. The implications are considered autogenous as they are

associated with a causal effect. These are implications that are conceptualized within the

technical perspective. They generally result from the application of such approaches,

without complex analysis of interference from other factors. They are the repercussions that

are most frequently mentioned in debates since they are close to the predominant ethical

model of science, which is usually limited to assessing the impact of products and devices

on the environment and on health. However, at the point where such use seems to present

risks that are more measurable and analyzable, it has to be ensured that the same

technology that enables it is capable of supplying instruments that are sufficiently accurate

to assess any failures and to propose solutions (Pyrrho, 2008).

4.2 Heterogenous ethical implications

The term heterogeneous refers to the fact that studies on nanotechnological devices and

their implications are conceived through different “images” of science. While the devices

result from the “scientific image”, the social understanding of their use relates to a “meta-

scientific” perspective on nanotechnology.

The possible repercussions from the use of nanotechnology that are dealt with here arise

from interfaces of various cultural, social, economic, environmental and political

dimensions. They are heterogeneous because they result from complex interactions and not

from evaluations performed by science itself. They require an ethical assessment that

Nanotechnology and Ethics: Assessing the Unforeseeable

133

diverges from the search for cause-effect relationships and consequent linear risk analyses

(Pyrrho, 2008).

Expectations of technical solutions for social problems, such as the prospect that some of the

main applications of nanotechnology could make it easier to achieve the United Nations

Development Targets through energy production and increased agricultural productivity

(Salamanca-Buentello et al., 2005), have raised environmental, political, economic and public

health questions that, due to their mutual implications, trigger a discussion that does not

deal in simple solutions.

There is quite a widespread understanding that nanotechnology represents a technological

revolution that poses new challenges for traditional understandings about science and

knowledge acquisition, its intrinsically unpredictable character serving to question the role

of science in searching for truth. The new facets that science has been acquiring are dictated

strongly by the avidity of the market for technology. This process through which science is

transformed into techno-science is followed by reconfigurations of economic power, and

consequently also of political power. This politicization of science, and of nanotechnology

specifically, which represents the convergence of science, technology, politics and economy

for social and government purposes, offers the possibility of a better integration of ethical

and philosophical reflections with scientific and technological development (Jotterand,

2006).

This type of analysis emphasizes nanotechnology as a social-technical system and the

cultural values infused in the technologies. The social scientists and ethical consultants who

devote themselves to the study of nanotechnology can therefore influence nanotechnology,

together with other actors. As a consequence, when understanding nanotechnology as an

emerging technology, it is important to address the systems/networks of people and things.

While the technology is being developed, the distribution of power and authority is being

built, meanings are being contested and consolidated, and social practices involving rights

and responsibilities are being established. These social arrangements are a subject that

should be examined in the light of ethics, using ethical concepts, language, principles, norms

and theories (Johnson, 2007).

In the philosophical image of nanotechnology there is a predominant criticism of the so-

called nanohype and of the dualist and reductionist discussion to which it has led. The

dystopian and utopian visions frequently provoke extreme reactions: the former frequently

produce widespread rejection while the latter often lead to eventual disappointment at the

gap between expectations and reality, as in the case of genetically modified organisms.

There is a strong suggestion that social engagement take place in an effective way and not

only as a form of avoiding public non-acceptance.

Although some heterogeneous ethical implications such as social control, intellectual

property, the knowledge economy and social (in)justice have not attracted media or public

attention in the way that cinematographic cyborgs and promised panaceas have done, the

implications that are often forgotten are the ones that portray the most tangible and

important dimensions for an analysis of ethics in nanotechnology.

While recognizing the possibility of problems in classification, the categories proposed here

can highlight possibilities for evaluating risks resulting from nanotechnology and the

complex interdependencies that are socially related. The categories point towards social

dynamics as the locus where diverse ethical reflections and public debates are increasingly

necessary.

Bioethics in the 21st Century

134

5. Conclusion

The challenging character of nanotechnology is illustrated by its cross-disciplinary nature

and the impossibility of ascertaining all of its applications and implications. Even the

theoretical foundations of nanoscience are based on these innovative features. The

unfeasibility of attaining this overall knowledge of nanotechnology, and the unpredictability

inherent in the properties it explores, are responsible not only for the emergence of new

ethical challenges but also for the need for a diverse approach.

It is clear that there can be a distinction between traditional ethics, which seeks answers to

questions already posed, and a conception that attempts ethical reflections regarding the

possible moral implications of the application of this new technology. This difference,

together with an understanding of the complexity of reality, indicates that there is a need for

an innovative kind of analysis. Therefore, to debate and eventually come up with moral

answers regarding nanotechnology, it is necessary to have a perspective with a sufficiently

dynamic basis that is not limited to a strictly codified ethics.

The approach needed to analyze an emerging technology is one that considers not only the

complexity of reality as a whole but also specific moral questions of a given socio-cultural

context. Consequently, the ethical values required are no longer those that are based

epistemologically on principles that lack both a sufficiently stratified theoretical basis and

applicability in complex contexts. They must not be based on accumulated segmented

scientific knowledge but on knowledge (of the facts) that considers complexity. From this it

is may be possible to generate normative implications that are applicable to a moral

dialogue that is guided by tolerance to differences and may also point toward decisions in

different socioeconomic and cultural situations.

Far from attributing intrinsic moral values, the intention in proposing a distinction

between autogenous and heterogeneous implications for the construction of an ethical

approach towards nanotechnology, taking into account the fallibility to which all

classifications are subject, is to distinguish these perspectives from the interactions that

this approach addresses.

The processes of research, production and application of nanotechnology are approached as

autogenous themes. Ethical reflections that involve risk analysis, which is not always

possible, demand a double ability: technical improvement, with the development of

adequate devices for such evaluations, and also the search for new ethical considerations

that are sustained even if knowledge is not imminently attained.

The heterogeneous questions, which deal with the complex interactions of society,

technology, environment, politics and economics, within the still incipient discussion on the

ethics of nanotechnology, are the ones that have received least attention, even though a

sober and attentive reading shows that they are extremely relevant and plausible.

In the light of the hype driving the race between laboratories to label their research with the

prefix “nano”, and between countries to lead the way in producing state-of-the-art

nanotechnology, political agents oscillate between disregarding ethical matters and calling

for a definitive moratorium on research. Given this scenario, ethical reflection on the subject

of nanotechnology has to be free from overreaction and immediacy. The approach taken

toward the emerging technologies, as in the case of nanotechnology, should sober, critical

and dialectical. A diversity of perspectives and interests should be considered when

Nanotechnology and Ethics: Assessing the Unforeseeable

135

searching for answers to the ethical challenges imposed by nanotechnology in the complex

modern context.

6. Acknowledgment

This work would not have been possible without the services of the University of Brasilia

Central Library.

Thanks also to Dr. Gabriele Cornelli for his unselfish and unfailing support.

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Speculative Ethics:

Valid Enterprise or Tragic Cul-De-Sac?

Gareth Jones, Maja Whitaker and Michael King

Bioethics Centre and Department of Anatomy, University of Otago

New Zealand

1. Introduction

The excitement generated by major scientific advances almost inevitably leads to intense

speculation concerning the uses to which these advances will be put. Since some of these

will be accompanied by ethical challenges, it is appropriate for bioethicists to delve into

their potential ethical implications. If the ethical dimensions of such advances can be

outlined and analyzed in advance, this would appear to be a welcome contribution to any

public debate that may ensue. However, the speculations range from those that could

eventuate within the near future and would represent an incremental change to present

practices, to those that are vastly less likely to come to pass and predict paradigmatic shifts

of momentous proportions. The challenge for bioethicists is to determine whether they

should devote their attention to such extreme speculative possibilities, or to more

circumscribed speculations, or indeed whether it is better to focus on existing issues, rather

than those that are merely possible.

An illustration of more circumscribed speculation is provided by no less a scientific

authority than Francis Collins in his 1999 Shattuck Lecture, in which he speculated on the

medical and societal consequences of the Human Genome Project in 2010, just 11 years into

the future. He described this as a hypothetical clinical encounter in which a 23-year-old

undergoes a battery of genetic tests. This was because by 2010 Collins speculated that the

field of pharmacogenetics would have blossomed to such an extent that a prophylactic drug

regimen based on personal genetic data could be prescribed to reduce cholesterol level and

the risk of coronary artery disease (Collins, 1999). As we look back at 2010 we can see that

these goals have not as yet been realized at the level hypothesized by Collins. The question

then is whether bioethical enquiry into the prospects opened up by genomic medicine has

been weakened by this excessive optimism.

Interestingly, at much the same time, Holtzman and Marteau (2000) contended that the new

genetics would not revolutionize the way in which common diseases are identified or

prevented. In wanting people to see beyond the genetic hype, they pointed to the

importance of existing issues, such as social structures, lifestyle and environment, for much

of disease. They also questioned how much interest would be shown in being tested

genetically and even more in making appropriate lifestyle choices. These too are

considerations calling for the attention of bioethicists.

It is evident then that even relatively focused speculation has its problems. What about far

more exploratory and aggressive speculation? Garreau (2005) considers that we are at a

Bioethics in the 21st Century

140

turning point in history since our technologies are now capable of altering our minds,

memories, metabolisms, personalities and progeny, and similar conjectures motivate Bailey’s

(2005) “liberation biology”. Such vistas have led serious scholars to devote considerable effort

towards counteracting what they see as a dangerous drift towards human self-modification,

genetic perfectibility and eugenic aspirations (Habermas, 2003). The end-result of these

biomedical technologies, it is claimed, is the emergence of programmed people, epitomized by

lack of moral responsibility since they are no longer the authors of their own selves. These

concerns emanate directly from taking seriously highly speculative futuristic visions of

medical accomplishments and often conflating these with current reality.

The question we are addressing here is whether bioethicists should spend time and effort on

speculative possibilities like these. In this chapter we describe and analyze some areas of

applied ethics (particularly bioethics) in which speculation is at its most adventurous, such

as nanotechnology, genetic technology, regenerative medicine, and cryonics. Possibly the

most speculative of these is cryonics, which draws on the rest as potential means for

fulfilling its vision. Because of these qualities, cryonics will be explored in greater depth as a

case study in speculative ethics.

The technologies underlying these areas require ethical attention and analysis; they deliver

new abilities into the hands of those who seek to use them, and ethical reflection helps to

determine the nature and extent of use that can be defended as being responsible. There

may be instances where this leads to a call for a prohibition on the use of a particular

technology, as has been the case of genetic engineering. Further, a new technology can have

unintended consequences that ethical scrutiny can help to reveal and evaluate.

In evaluating new and emerging technologies one of the major problems is arriving at an

understanding of what the technologies are, and of how they might be developed in the

future. This, as we have seen, is a path beset by uncertainties, yet understanding them as

much as possible is integral to informing moral evaluation of them. This is because

judgments that rely on false beliefs about new technologies can have pernicious

consequences for the use of the technologies, and for the credibility of applied ethics. As

speculation becomes more radical, and our uncertainty about the prediction increases, the

epistemic status of applied ethics becomes less secure, and its value more questionable. To

explore these issues, we address arguments for and against the role of speculation in ethical

analysis of technology, and suggest some boundaries on ethical engagement with

speculative matters. First, we will survey some areas of science and technology, focusing on

the role that speculation has played in their development.

2. Genomic medicine

Genetics has to some degree always played a role in modern health care, but it was thought

that the decoding of the human genome in 2003 would provide unprecedented

understanding of the functions and interactions of the entire genome, producing a

revolution in health care under the rubric of genomic medicine (Guttmacher and Collins,

2002). It was hoped that a clearer picture of the human genome would particularly

transform the treatment of multifactorial disorders such as breast and colorectal cancers,

and Alzheimer’s and Parkinson’s diseases, where inherited risk has long been implicated

but little understood. Genomics was expected to uncover the mechanisms of complex

diseases, including asthma, hypertension, and diabetes. Vignettes were frequently

proposed, featuring a patient visiting a doctor, who would order genetic testing that

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 141

revealed certain genetic predispositions, allowing the doctor to craft a personalized

approach to care, ensuring optimized prevention, diagnosis and treatment. There can be

little doubt that these confident claims for genomic medicine were put forward in good

faith. However, it was faith in an overly reductive and deterministic view of genetics, and in

the ability of biomedical scientists and their clinical colleagues to translate the believed

promise of genetic science into clinical reality. The gulf between genomics and personalized

medicine turned out to be far greater than envisaged, resulting in an overstated optimism

(Guttmacher & Collins, 2002; van Ommen et al., 1999) that, as mentioned, resulted in what

now appear to have been quite unrealistic timescales (Collins, 1999).

It has emerged that even though markers of human variation (single nucleotide

polymorphisms) can be associated with disease predisposition in large population samples,

they contribute little to the apparent heritable risk and have poor predictive power at the

individual level (Kraft & Hunter, 2009). Sequencing an individual’s genome can produce a

large amount of information, but the data is difficult to interpret, and so genomic medicine

still has little effect on the health care of individuals (Collins, 2010; Hall et al., 2010).

The push to decode the genome carried with it an impetus to explore the ethical, legal and

social implications of the new genetic knowledge, with the Human Genome Project

dedicating five per cent of its budget to this cause. The program focused on clinical

integration of genetic technology, public and professional education, and the fair use of

genetic information, particularly in employment and health insurance (Collins, 1999). The

aspiration to anticipate these implications before they transpire has been beneficial in

allowing the formulation of appropriate guidelines and legislation, even though the

timescales expected have proved awry (Ginsburg & Willard, 2009).

In terms of speculative ethics, therefore, genomic medicine stands as a beacon of hope.

There has been speculation, some of which has been astray. Nevertheless, it has been limited

in scope and concerted efforts have been made, and continue to be made, to tie in the

scientific advances with considered ethical input and direction. The resulting liaison

between the science and the ethics has been to the benefit of both.

3. Nanotechnology

The term “nanotechnology” was coined in 1974 by Norio Taniguchi (Taniguchi, 1974) and

popularized in 1986 by Eric Drexler (who may have been unaware of its earlier usage) in his

book “Engines of Creation: The Coming Era of Nanotechnology” (Drexler, 1986).

“Nanotechnology” refers to the manipulation of matter at the atomic level. At this scale

particles have different mechanical, electrical, thermal, optical and magnetic properties,

possibly allowing the development of a whole range of materials and devices with new

applications in fields as diverse as medicine and energy production. It has

been postulated that nanomachines will one day be responsible for food production, biological

repair, sewage processing, commodity fabrication, and house cleaning (Milburn, 2002).

Early discussions of molecular manufacturing were preoccupied with self-replicating

nanomachines, and the prospect of the world being converted into a grey goo by these

nanobots, a scenario sketched by Drexler in his seminal work (Drexler, 1986). Thus, a

speculative doomsday scenario has characterized the field of nanotechnology from its earliest

beginnings. Unfortunately, this has continued to dominate popular perception of

nanotechnology (Sheetz et al., 2005), so much so that Drexler wishes he had never coined the

term (Giles, 2004). He writes, “Fears associated with that old scenario are interfering with

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current research. . . . Researchers resent it and I want to clean up the mess.” (Giles, 2004).

Drexler now acknowledges that nanoscale manufacturing does not require self-replicating

devices, and so this conjectural danger can be avoided through prohibition (Phoenix and

Drexler, 2004). The most fruitful area of research to date has been the production of nanoscale

particles, such as carbon nanotubes, for the manufacture of characteristic materials for use in

electrical circuits, textiles, and cosmetics (Coyle et al., 2007; Mu & Sprando, 2010).

However, the fears provoked by the “grey goo” scenario have persisted, and apparently

have been manipulated by some environmental groups to engender support for their

present concerns regarding technology profiteering (Giles, 2004). By contrast, in informed

circles the nanotechnology debate has settled down into less spectacular, but more

substantive issues, such as the possible toxicity of nanomaterials (Xia et al., 2009), their

effects on biological systems (Navarro et al., 2008) and the global economic effects of a

possible nanotechnology revolution.

The relevance of this area for the present essay is the role of applied ethics in such ongoing

debate. To what extent does bioethical commentary continue to grapple with speculative

and alarmist scenarios? It is likely that the “grey goo” possibilities occupied attention that

could otherwise have been directed towards the issues that ethicists are now focusing on, to

far greater benefit. However, the dramatic and catastrophic threat described by Drexler’s

scenario seems to demand addressing. These typify the problems posed by speculative

matters in applied ethics, which we will explore later.

4. Regenerative medicine

The term “regenerative medicine” first appeared in the literature in 1992 as a hypothetical

future technology that could revolutionize clinical treatment (Kaiser, 1992). The idea gained

momentum when embryonic stem cells were isolated in 1998 (Thomson et al., 1998), and the

possible clinical significance of their growth potential and pluripotency was appreciated. In

theory, damaged tissues and organs could be regenerated by insertion of stem cells,

stimulation of endogenous stem cells, or transplantation of tissues or organs grown in vitro

from the patient’s own stem cells (Mironov et al., 2004). The underlying hope is that these

techniques will radically advance the treatment of diseases as wide-ranging as Alzheimer’s

and Parkinson’s diseases, diabetes and spinal cord injury.

As is often the case at the cutting edge of scientific development, exciting prospects raise

unwarranted hopes bereft of a feasible scientific basis, and this has been particularly so in

the field of regenerative medicine (Kirkpatrick et al., 2006). The prospects within

regenerative medicine have captured the imagination of commentators from a variety of

backgrounds, who too often have moved with undue haste from considering the use of stem

cells to treat disease and disability to the potential to redesign human nature (Bostrom, 2005;

Glannon, 2008; Ip, 2009b). Regenerative medicine is depicted by some as being “rich with

Promethean promises”(Ip, 2009a, p. 3). It is here that we enter the realm of transhumanism

and posthumanism, where ethicists have considered the implications of these in terms of the

exacerbation of social inequalities, intergenerational fairness, environmental ethics, and the

problems posed by endless life spans, with subsequent divergence of enhanced and

unenhanced human species (Agar, 2007).

Far away from these highly speculative vistas, in today’s laboratories the field of

regenerative medicine faces complex difficulties that are hampering the clinical application

of stem cells at the most basic level. For example, scientists are yet to ascertain how to

reliably direct cell differentiation to the desired lineage and modify cells without raising the

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 143

risk of tumor formation (Kirkpatrick et al., 2006). While this is a rapidly moving area of

research, solutions to these basic problems will likely come gradually and hype should be

tempered with caution (Daley, 2010).

Regenerative medicine raises bioethical challenges at different levels. Discussion that

uncritically conflates regenerative medicine and its likely prospects with grandiose claims

about remaking what it means to be human (e.g. Ip, 2009b) is profoundly misleading.

Distaste over the latter claims may unfairly taint regenerative medicine, with the end-result

of discouraging what could turn out to be extremely helpful medical interventions. While

this may not be the intention of such commentators, it will only be avoided by clearly

distinguishing the speculative hype from the serious science. Regenerative medicine in the

clinic is not being driven by a program that views the human body as infinitely plastic, or

that denies human finitude and mortality, and yet this is the concern of some who have

been taken in by speculative hype (e.g. Song, 2009). Speculative bioethics of this ilk will

simply perpetuate fundamental misconceptions.

Also of concern is the preoccupation of ethical debate on stem cells with the moral status of

embryos. It is true that embryos are destroyed in the process of deriving embryonic stem cells.

This is therefore a legitimate topic for debate and should not be avoided. However, this is not

the sole area of bioethical debate on the potential of stem cells, especially as they relate to

regenerative medicine. Lysaght and Campbell have cogently argued that bioethicists must also

give due attention to the largely neglected issues of informed consent processes, the

exploitation of women, the commodification of human tissue, science communication and the

ownership of immortal cell lines (Lysaght & Campbell, 2011). All these are core ethical

considerations for regenerative medicine as it seeks to enter the clinic. The fact that devoting

attention to the issue of the embryo’s moral status has left other important issues unattended

shows the scarcity of moral consideration as a resource, and raises the question of how this

consideration should be distributed. Speculative scenarios, with little if any relation to current

clinical practice, such as the remaking of human nature through regenerative medicine,

threaten to displace attention further from pressing current and emerging issues.

5. Cryonics

In simple terms cryonics is the practice of storing at very low temperatures the bodies or

heads of legally deceased people (or animals), termed cryonic suspension. The purported

value of cryonic suspension is that, from the stored body/head, the dead individual may be

able to be resuscitated, allowing physical life after an indefinite period of death.

If there is a landmark publication for cryonics, it is Robert Ettinger’s book “The Prospect of

Immortality” (Ettinger, 1965). This is an attempt at a systematic evaluation of, and positive

program for, the cryonics project. At the time of its publication no human bodies had been

stored using cryonics, although the principle of freezing and reviving whole animals had been

successfully demonstrated by Audrey Smith in the 1950s (Parry, 2004). Smith had succeeded in

reviving some hamsters after freezing at -5 ºC for 50-70 minutes, a minority of which survived

for times approaching the normal hamster lifespan. However, Smith also established that this

limited success disappeared if animals were frozen for longer than 70 minutes.

Presumably seeing the cup as half-full, Ettinger attempted to outline a viable approach to

cryonics. Not a cryobiologist (he was a retired college maths and physics teacher at the

time), Ettinger provided a semi-scientific evaluation of the problems facing the success of

the cryonics enterprise, and an optimistic view of its eventual success. In a section entitled

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“After a Moment of Sleep” (Ettinger, 1965, pp. 5-6) he describes a tired old man who will

think of his death as merely a moment of dreamless sleep, like anaesthesia. This man will

“awaken” unaware of the potentially vast period of time elapsed, and find himself in either

a rejuvenated state, or about to undergo a process of “renovation”. This can provide, if

desired, the “physique of Charles Atlas”. His “weary and faded wife” may also choose a

physique to “rival Miss Universe” if she wishes. And, more importantly, “they will be

gradually improved in mentality and personality”. He imagines a future world which

resembles “the present, king-sized and chocolate covered”, in which “the resuscitees, will be

not merely revived and cured, but enlarged and improved, made fit to work, play, and

perhaps fight, on a grand scale and in a grand style.” (Ettinger, 1965, p. 6)

With fanciful claims such as these in a foundational document of cryogenics, it is not

surprising that the movement has been subject to ridicule. However, Ettinger acknowledges

that “to remove the prospect of immortality from the realm of thin, hazy speculation or

daydreams and secure it in the domain of emotional conviction and work-a-day policy…

objections must be met, [and] a host of troublesome questions answered.” (Ettinger, 1965,

pp. 6-7) This is what his book aimed to do.

Many of the objections and troublesome questions may be of ethical importance. For

instance, is cryonics impossible, perhaps even in principle? If so, are companies offering

cryonic services being misleading at best or fraudulent at worst? What is the legal and moral

status of the bodies in cryonic storage? If the claims of cryonicists are borne out in the

future, what lives would the patients awake to, and could they reasonably be said to have

consented to this given what they knew before they died? Should cryonics be judged more

as a medical or mortuary procedure?

In order to evaluate cryonics ethically, it is necessary to know what the process might

involve. In the light of this how likely is it that any of these currently impossible stages of

the process will eventuate in the foreseeable future?

Cryonics may be divided into four stages: patient preparation and freezing, storage,

renovation and resuscitation, and life. The first stage is the preparation and freezing of the

cryonics patient. Here, the body of a patient is prepared for freezing, and rapidly cooled to a

temperature below -120ºC. Various procedures are undertaken by cryonicists with the aim

of minimizing post-mortem damage to the body (see Best, 2008). This damage is in part

what would occur to any body after breathing and blood circulation cease (broadly termed

ischemic injury (Kerrigan & Stotland, 1993)), and in part injury that can result from the

cooling process (mainly ice crystal formation (Best, 2008)).

Once the body is appropriately prepared, cooling to temperatures below -120ºC occurs. The

goal for cryonicists at this stage is to achieve vitreous cooling with the aim of avoiding the

cellular damage caused by conventional freezing through ice crystal formation (Best, 2008).

Cooling a large biological system like a human body to a contiguous vitreous state is not

achievable at present – something cryonicists appear to freely admit (Fahy et al., 1990; Fahy,

2004). The main focus of cryonics is the resuscitation of the person who died (i.e. their

identity or conscious self), not merely their body. Consequently, cryonics has tended to

focus on achieving vitrification primarily in the part of the body they believe necessary for

this to occur, viz., the brain (Best, 2008), hoping that its smaller size will give greater chance

of success. Many cryonics facilities offer storage for so-called “neuro-suspension or neuro-

preservation” (Parry, 2004, p. 394) patients, namely, the preserved heads (with enclosed

brain) of those who have died.

The second stage is the storage of the cooled cryonics patient at low temperatures until

scientific advances make successful resuscitation possible. The main issue here seems to be

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 145

storing the patient at a sufficiently low temperature that vitrification is maintained, yet high

enough to minimize cracking and fracturing of the glassy, vitreous tissue which can occur at

very low temperatures (Parry, 2004). A second issue in the storage phase is the maintenance of

the patient in the cooled state continuously for an undefined period of time. This is dependent

on the cryonic facilities being operational for that time, and also the storage being funded by

the patient for the undefined duration – difficult matters to ensure with certainty.

The third stage is the renovation and resuscitation of the patient. Here speculation is at its

most extreme. While there are considerable problems associated with the previous stages,

these pale in comparison to the problems faced in thawing, repairing, reviving and perhaps

enhancing the cryonics patient. However, cryonics has an in-built defence against these

problems – the seemingly limitless potential for science and medicine to advance and

overcome obstacles, if it is provided with sufficient time. The strength of cryonics is that the

stored cryonics patients have plenty of time to spare.

Thus, while cryonicists give the impression of taking seriously the challenge of reducing

obstacles to successful revival, there is always the possibility of appealing to speculative

possibilities within future science as the solution. This means that scientific limitations do

not have to be addressed too directly. Nevertheless, the potential problems are legion. These

include: repair of whatever dysfunction or injury caused the death of the patient, and

damage occurring between this time and freezing; repair of any damage caused by the first

and second stages of cryonic intervention, such as toxic effects of the cryoprotectants, ice

damage or fracturing of vitrified tissue; thawing the body, avoiding or treating de-

vitrification (cellular collapse) and any other damage caused; removal of cryoprotectants

and reperfusion of the body with blood, while avoiding reperfusion-induced injury; any

problems associated with reviving the conscious person from their deceased state, to a

healthy and possibly enhanced state.

Cryonicists argue that these seem like huge problems from the point of view of current

science and technology. A strong theme underlying their confidence in the power of future

science and technology is often a highly reductive view of biology and medicine. According

to this, all of the problems mentioned above are simply a matter of atoms being in the

wrong configuration within a biological system; move the atoms into the correct

configuration and energy state, and the patient is resuscitated. The clearest statement of this

is provided by Merkle (1992, pp. 6-7): “… the purpose of medicine is to change

arrangements of atoms that are ‘unhealthy’ to arrangements of atoms that are ‘healthy’.”

From this reductive view, future developments in medicine will involve gaining better

control over our ability to manipulate atoms – medicine (especially that involved in

cryonics) will be a matter of nanotechnology (Merkle, 1992). The cryonics community’s

endorsement of nanotechnology is probably not welcome news to those scientists studying

the behaviour of matter on a very small scale. In fact nanoscientists have often sought to

distance themselves from this type of science fiction speculation (Milburn, 2002) in much the

same way as cryobiologists have sought to distance themselves from cryonics.

The speculation increases even further when considering the life awaiting a resuscitated

cryonics patient. An idealistic vision is exemplified by Ettinger’s claim that “You and I, as

resuscitees, may awaken still old, but before long we will gambol with the spring lambs –

not to mention the young chicks, our wives.” (Ettinger, 1965, p. 63). Less optimistic, but

equally speculative, possibilities could include life in an impaired mental or physical state as

a result of imperfect techniques – a life with unforeseen suffering, perhaps that one might

judge not worth living. Another might be that continuity of consciousness is lost, causing

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the revived person to effectively be a new individual without any memory of their previous

pre-resuscitation life (that such loss may occur is even admitted by a cryonicist (Best, 2008)).

5.1 What is an appropriate ethical analysis of cyronics?

Each of the stages of cryonics as it is currently practised and envisioned by cryonicists is a

potential focus of ethical scrutiny. Cryonics is regarded by its adherents as an indefinitely

prolonged medical procedure. Considering it from this point of view, it should be analyzed

as such, opening up a vast array of medical ethical considerations. For example, is the

consent given by the cryonics patient adequate considering the unknown nature of much of

what the full procedure may entail? Should patients be able to undergo cryonic preservation

before legal death, when cryonicists claim it would be more likely to be effective? A

practical legal issue is the property status of the revived person and their body. As current

law stands in most jurisdictions in which cryonicists operate, property rights over the

deceased person’s body are ceded to the cryonics company (it is treated as a bequeathed

cadaver) – is this reversible if the cadaver comes back to life? What is the moral and legal

status of the frozen body, and what implications does this have for the standard of care

provided by the cryonics facility? Is the prolonging of individual lives (potentially

indefinitely, according to cryonicists’ vision of future medicine) morally wrong, justifiable,

or perhaps even required? And if the latter, should public funding be provided for the

practice and for research to further its development and use?

Alternatively, cryonics could be viewed as an intricate and expensive mortuary procedure.

From this point of view a largely different analysis emerges, characterized by different

issues. For example, since cryonics is not marketed as an alternative to embalming and

burial or cremation, are people who enter the contract being defrauded? What should be

made of the (on this account) mistaken beliefs of those practising and undertaking the

procedure? Should the wishes of cryonics patients be respected posthumously, especially

when these are wishes that can (or, at best, may) never be realized? Is cryonics a repugnant

use of a dead body, and, if so, does this have any normative implications?

Depending on one’s judgment of the future success of cryonics, two quite different, and

ultimately incompatible, avenues of ethical consideration will be pursued. It should be

noted that, for those stored cryonically and for cryonicists, the decision of whether cryonics

should be treated more or less speculatively by bioethicists is nothing less than a matter of

life or death. Cryonics patients are at risk by their being incorrectly treated as cadavers – for

example undermining research into their reanimation, and giving insufficient support for

their care while in storage. The quality of their future lives is also at risk through insufficient

preparation for eventual reanimation. Should bioethicists consider these questions even

though they may be skeptical about the science? If the claims and objectives of cryonics are

taken seriously, to focus on the wrong question could be decried as being complicit in

killing (or perhaps letting die), or at best harming, these patients (Nordmann, 2007).

How should ethicists decide between these two possibilities? One option is to consider both,

however this means that a great deal of time is devoted to considering highly speculative

possibilities, which may never eventuate. Perhaps the likelihood of one or the other being

correct should be estimated, and the lower probability, speculative scenario eschewed in

favour of the other. This grounds ethical analysis in reasonable scientific understanding and

expectation, and confines ethics to those moral issues that are currently present—in this

case, the current reality of individuals having their cadavers frozen and stored indefinitely

postmortem—rather than those that may never exist at all.

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 147

6. The problems of speculation in ethics

It is worth remembering what may be at stake, both in the case of cryonics, but also for

speculative matters more broadly. If considerable attention is devoted to speculative

possibilities like cryonics, what is at stake is the neglect of more current moral issues from

which practical and ethical attention has, to some degree, been diverted (Nordmann, 2007).

Whatever response one might make will have to take note of competing priorities: to devote

attention to the ethical demands made by suffering due to famine, environmental disasters,

or war, the needs of the infertile, the chronically sick or the terminally ill, against the

demands of those who have freely decided to undergo cryonics in the hope of a better life at

some indefinite time in an indefinite future.

One problem of speculative ethics is epistemological – the more speculative and removed from

present experience possibilities become, the more uncertain our knowledge becomes. It will

have little in common with current technology. For example, Drexler’s speculative ideas about

self-replicating nanomachines bore little resemblance to nanotechnology at the time he

published Machines of Creation. Moreover, it bears little resemblance to current

nanotechnology, which has advanced significantly in the manufacturing of nanoscale products

using techniques such as self-assembly, rather than the more fanciful nano-machines of

Drexler’s speculation. While Drexler’s general idea of the way in which nanotechnology will

develop is not necessarily false (only time can determine this), there is little relationship

between these speculative visions and existing technologies. This may do intense disservice to

existing technologies and the way in which they are perceived (Jones, 2006).

However, like all empirical predictions about the way a technology will emerge or develop,

speculations, such as those of Drexler, may indeed be false. In this way, speculative claims

informing ethical reasoning suffer from the same weakness that afflicts the empirical version

of slippery slope arguments. Empirical slippery slope arguments rest on an empirical

prediction, arguing that (acceptable) policy or situation A will, as a result of social or

psychological tendencies, result in the emergence of (unacceptable) policy or situation B.

Like any forward-looking empirical claim, it is open to challenges on its assumptions about

social or psychological tendencies or whatever mechanism is being used to justify the claim.

An overarching problem is that it is usually only in retrospect that we can know with any

certainty whether our speculations or prognostications were accurate. Also of relevance to

this discussion is our inability to predict future scientific developments with reliable

accuracy. One only has to think of once assured dicta that, with hindsight, proved

unwarranted obstacles to further research. There was the alleged inability of the central

nervous system to regenerate to any discernible extent after birth, or to replace any of its

neurons (Ramon y Cajal, 1928). Alongside this can be placed the alleged impossibility of

cloning in mammals (McGrath & Solter, 1984). We have already discussed the opposite

phenomenon, which is the occurrence of obstacles that either were not predicted, or were

underestimated. Clearly, when dealing with predictions, ethicists, as much as other

philosophers, scientists, and policy makers, need to be wary.

A second problem is that these epistemological problems have moral consequences. As

ethics becomes more speculative, its relation to the technology that it is discussing grows

increasingly tenuous. This raises problems we have already touched on. First, it diverts

ethical attention away from current concerns pertaining to the technology, concerns often in

need of ethical attention. Second, the speculative moral judgments about a technology can

influence current perceptions of it. Hence, an emerging technology can be smothered or

hampered, either by the weight of enthusiastic speculative expectations (such as has

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arguably been the case for genomic medicine (Evans et al., 2011)), or by the weight of moral

and social condemnation as a result of the harmful implications of the speculative aspects of

the technology (such as the grey goo scenario for nanotechnology). Both can have unjustly

negative consequences for the technology under discussion.

Applied ethics must be applicable to some ethical issue or problem. Unfortunately,

speculative ethics relates to speculative. Consider the ethical discussion on genetic testing

in assisted reproductive technologies (ARTs) regarding whether embryos with particular

genetic combinations should or should not be implanted in a woman for further

development. While a much of this work has addressed pressing issues such as the moral

status of these types of procedures and the implications this may have for social

regulation of reproductive choices, a troublingly large portion of this work anticipates or

presupposes a future in which the desired genetic composition of a child can be

determined or when all human reproduction is handled by technological means such as

these (Sharma, 2007; Steinbock, 2008). Excessive concentration on the latter at the expense

of the former is paying more attention to speculative scenarios far removed from current

scientific reality than to current applied ethical considerations. Speculative ethics does not

conform to paradigmatic work in applied ethics, in that it addresses imaginary (and

perhaps never to be realized) moral problems, not extant, or often even very likely,

practical problems.

This raises the question of whether ethicists should be free to consider whatever they like, or

as we are arguing, should their attention be directed towards particular issues and projects?

Moral reflection is not an infinite resource and this leads to the question of how it should

best be distributed. One plausible way of distributing a scarce resource is to do so in a way

that maximizes benefit. The prima facie case described here is that, unlike paradigmatic

applied ethics, the benefits of speculative ethics are not clear, since it does not directly

address extant moral problems (Nordmann, 2007; Nordmann & Rip, 2009).

We argue that, since those engaging in speculative ethics are doing so at the expense of

addressing real (i.e. not imaginary) moral issues, there is a distributive justice problem here.

This allows ongoing moral problems to persist, whether these be problems related to

famine, harmful exploitation of the vulnerable, or health inequalities. These wrongs and the

suffering they cause are immense and are currently occurring. The obligation to use moral

reflection to address these problems ought to be a concern for every moral philosopher,

motivating them to seek as just a distribution of their discipline’s work as possible. If these

problems and many like them are taken seriously, they lead to a commitment to work on

problems like these rather than on highly speculative ones.

Thus, speculative ethics may squander the benefit that can be derived from the application

of moral reasoning to current problems. However, speculative ethics may go further than

this, reducing the potential of some current and emerging technologies to realize their

benefits for society, and in this way diminishing the means available for addressing current

problems. Examples already alluded to include nanotechnology and the self-replicating

nanobots and “grey goo” scenarios, and regenerative medicine with speculative concerns

about radical life extension and a posthuman future.

A related manner in which speculative ethics can negatively affect current and emerging

technology is the flipside of the first. This technology can be overwhelmed by a weight of

expectation that it is unable to match. This has arguably been the case for genomic

technologies, with their expectation of ushering in a new era of personalized medicine with its

tailored pharmacological and behavioural prevention and treatment of disease (Collins, 1999).

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 149

This raises an interesting issue since in this case the problems have been created more by

scientists than by ethicists. Much of the hype has come from scientists within the field,

perhaps “talking up” the potential impact of their work in an attempt to gain research

grants in an extremely competitive funding market, and also reflecting excitement at the

promise certain emerging technologies might hold (Evans et al., 2011). As outlined earlier,

the director of the National Human Genome Research Institute in 1999 anticipated the

hugely beneficial effect that genomics would have on medicine by 2010 (Collins, 1999).

Collins does caution that his vision has obstacles to its realization, but the ones he identifies

are not scientific, but rather ethical and practical. According to Collins (1999) ethical and

regulatory hurdles must urgently be addressed to ensure that genetic information is not

misused, and health professionals, such as medical genetic specialists, must be educated to

ensure that they are up to the task of understanding and treating patients using genomic

medicine.

The moral imperative that Collins asserts is an example of what Nordmann has referred to

as “foreshortening of the conditional”, a general problem that he claims underlies much

speculative ethics (Nordmann, 2007; Nordmann and Rip, 2009). He characterizes such

speculative moral claims as having the conditional form: if conditions C obtain, then

speculative scenario A will occur, and this will create or exacerbate ethical issues I1, I2, and

so forth. The foreshortening of this conditional statement occurs when the “if” becomes

subsumed by the “then”, which he claims creates a mandate for action with respect to the

scenario and the ethical issues that arise:

‘If-and-then’ statements begin by suggesting possible technological developments and

then indicate consequences that seem to demand immediate attention. What looks like a

merely possible, and definitely speculative future in the first half of the sentence (the

‘if’), turns into something inevitable in the second half (the ‘then’). As the hypothetical

gets displaced by a supposed actual, the imagined future overwhelms the present

(Nordmann & Rip, 2009, p. 273).

Thus:

The true and perfectly legitimate conditional “if we ever were in the position to conquer

the natural ageing process and become immortal, then we would face the question

whether withholding immortality is tantamount to murder” becomes foreshortened to

“if you call into question that biomedical research can bring about immortality within

some relevant period of time, you are complicit with murder” – no matter how remote

the possibility that such research might succeed, we are morally obliged to support it

(Nordmann, 2007, p. 33).

Collins’ speculative vision of personalized genomic medicine in 2010 was false. As a result

of highly optimistic predictions such as this and others (Epstein, 2004), many of the

promises of genomic medicine remain unfulfilled (Evans et al., 2011) despite considerable

progress being made. It is now being asked whether time and money spent on genomic

medicine has been wasted, or would have been better spent elsewhere, such as on

population-based public health strategies to reduce smoking, obesity and risky alcohol use

(Hall et al., 2010; Holtzman & Marteau, 2000). Nordmann (2009) argues that dramatic

promises such as these are often made with regard to emerging technologies, and they

support the “conditional foreshortening” arguments that he maintains provide much of the

impetus for speculative ethics.

Evans et al. (2011) argue that conjectures, like that of Collins, about future developments

within science and technology can be – perhaps counter-intuitively – an impediment to

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their development. This is because they can underestimate the number and extent of

hurdles that must be overcome in the course of development, and overestimate the

benefits of their particular approach as a means to address problems. The combination of

these factors means that other potentially promising approaches can be overlooked,

leading to a crippling misallocation of resources, which can endanger the sustainability of

the field (Evans et al., 2011). In addition, scientific and technological promises made are

frequently not delivered on, which undermines the legitimacy of science in general, and

the field from which the speculation arises in particular (Nordmann & Rip, 2009). This

helps to explain the distance that many scientists seek from hyperbolic interpretations of

their work (such as those working within nanotechnology and cryogenic science). A

realistic appraisal of current and future developments in science, and the promises made

about science and technological development, is needed in order for it to receive the level

of trust and support that it deserves, but also, and perhaps more importantly, to allow for

the allocation of research resources to those areas of most (genuine) promise and moral

relevance.

Applying this approach to cryonics draws attention to the number and enormity of the

scientific hurdles that must be overcome in order for reanimation of stored bodies to be

possible, assuming that this is possible, even in principle. However, as mentioned above, the

peculiar nature of cryonics affords its devotees a response to objections of this kind, namely,

that the bodies can be maintained in storage until such time as science has developed

techniques for repairing and reviving them. Thus the fact that time-consuming scientific

hurdles must be overcome is not in itself seen as a problem with respect to the revival of the

stored bodies. However, the longer it takes for these hurdles to be overcome, the more likely

it is that other factors will arise to thwart or displace cryogenic aims, such as the possibility

that medical advances will extend human life to the extent that cryonics becomes irrelevant.

However, this assumes that revival of cryonically stored bodies is possible, and that

continuity of strong personal psychological identity is maintained in the revived body –

both extremely dubious assumptions.

While cryonics is an extreme illustration of speculation, both scientific and ethical, it

typifies the problems of speculative ethics. The example of Collins shows that even

relatively modest speculation can be problematic. These problems amount to a strong case

for the rejection of speculative ethics in favour of grounding ethics in realistic and

rigorous appraisals of science and technology, and a focus on current and imminent

concerns.

7. Exploring Roache’s defence of speculation

Our evaluation of speculative ethics would be incomplete without looking seriously at a

counter analysis in its favour. Roache’s (2008) article aims to defend speculative ethics against

the objections we have so far leveled at it, so it is important we explore it here. Roache begins

by pointing out the important role of thought experiments in philosophy, which are highly

imaginative and serve to test and analyze our intuitions, while noting that these are imaginative

analytic tools, rather than speculations about possible future events. Also, she argues that a vast

amount of ethical thinking involves anticipating, evaluating, and choosing among possible

future events – often very mundane ones – many of which will not come to pass.

Roache’s main argument can be summed up like this. (1) Some speculative future

possibilities may be great potential harms or goods. (2) We ought to determine which

speculative future possibilities are harmful or beneficial, so that the former can be avoided

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 151

and the latter pursued; ethical analysis is required to make these value judgments.

Therefore, (3) we ought to give ethical consideration to future possibilities.

This allows ethics to be in the business not merely of considering and solving current and

emerging problems, but also of shaping the direction of social and scientific development

away from future harms or towards future goods. To do otherwise would be to let science

and society develop without any moral guidance, allowing ethicists only the job of

solving problems once they have arisen or are imminent. She argues that many of our

most important projects are the result of moral evaluation of a problem and speculation

about potential future solutions to it. She cites as examples the development of the ARTs

that allow the selective implantation of embryos, as a response to the moral problem of

genetic disorders, and carbon capture technology as a response to the problem of global

warming. In one respect, these examples do not serve her position well. They are both

examples of current, not speculative, moral problems, for which technological responses

are developed. Devoting the scarce resource of moral attention to these is therefore

acceptable to the anti-speculation position. However, the development of solutions to

these moral problems may require speculation about the nature of possible solutions, and

the evaluation of these to determine which ones ought to be pursued. Roache argues that,

without this moral engagement with speculative possibilities, scientific resources may be

squandered by pursuing solutions that are morally problematic, or not maximally

beneficial.

A difficulty with Roache’s main argument arises with the quantifiers. Premise one can be

accepted. However, even if we accept that some speculative and unlikely possibilities are

worthy of ethical consideration, we must still determine which possibilities these are. This

requires that all possible future possibilities must be imagined and ethically evaluated, no

matter how unlikely. Thus the correct conclusion to the above argument is that we ought to

give ethical consideration to all future possibilities. Given the consideration that ethicists are

a scarce resource, it makes sense that their time should be spent wisely. Among the

infinitely many speculative possibilities, and the vast number of actualities to which

ethicists could direct their attention, it is plausible to argue that it would be best for them to

attend to those that are most significant morally and most likely to eventuate. She disagrees,

arguing that even moves to restrict scope to only those possibilities that are not known to be

highly unlikely are misguided. She cites two counter examples, and she uses these as

evidence that we take seriously highly unlikely possibilities when they promise great harm

or benefit. First is the possibility that the Large Hadron Collider will create a black hole that

will destroy the earth, which was the basis for a lawsuit to halt its activity (Boyle, 2008);

second is the fact that heroic efforts are often expended to provide benefit (such as

attempting to save a life) even when this is the least likely outcome.

The example of the Large Hadron Collider lawsuit is question-begging. While it does show

that the plaintiffs took seriously the threat that they believed the Large Hadron Collider

could pose to the future of the world, it does not show that anyone else did, or, more

importantly, that anyone would be right to. The argument mounted by the plaintiffs is

arguably an example of what Stich (1978) calls a “Doomsday Argument”. This is an

argument based on the principle that prohibition is required of any activity that holds a non-

zero chance of causing an unthinkably immense catastrophe. Such a principle would

prohibit a vast amount of innocuous work (in the sciences and elsewhere). For example,

there may be a non-zero possibility that a chemical synthesized in a laboratory may initiate a

chain-reaction that obliterates the ozone layer, destroying all life on earth. However,

Bioethics in the 21st Century

152

prohibiting all chemical synthesis based on this possibility would be ridiculous. Van der

Burg notes that these “Doomsday Arguments” are a philosophically uninteresting variant of

slippery slope arguments, in which the objected-to outcome “is so highly speculative that

the cogency of the argument—insofar as it exists—depends more upon the horror than upon

the likelihood [of it occurring]” (van der Burg, 1991, p. 43).

More challenging is Roache’s example of heroic attempts to save a life, such as a child

trapped in a cave. A search and rescue team is available; however, it is highly unlikely that

they will find the child alive. We may, she contends, react with horror to the suggestion that,

in light of the small probability of success, it is not worth the cost (in terms of time,

resources, risk of injury) deploying the search and rescue team. She argues that the value of

the child’s life is such that we deem it worth these heroic efforts, despite their highly

unlikely chance of success.

Clearly we do undertake these, but, as with the previous example, this does not show that

we are always right to do so, nor does it show why we might be right to. It is worth

noting that, if the rescue is undertaken, it may not be justified by the value of the

speculative outcome, but by the consequences of the undertaking regardless of outcome. For

example, in this case, the institution of child-rearing may be negatively affected by

parents believing that the state will abandon their children in times of great need, hence

the rescue must proceed. At an abstract level, the resources expended in such an

endeavour may produce greater benefit if spent elsewhere, say improving public health in

third-world countries, or providing vaccinations. However, Roache’s example is a

practical one, and the rescue team cannot be deployed to third-world countries to work on

sanitation systems there. In other words, this example is disanalogous in terms of

deciding which speculative possibilities are worth taking seriously in applied ethics and

pursuing as a society. Nevertheless, we might adjust the scenario to minimize this

problem, by having other children lost in other caves within the rescuer’s area.

Differences in the nature of the caves and the children make the chances of success

finding some more likely than others. There are enough rescuers to undertake some of the

rescues immediately, while others must wait. In this situation it is reasonable to undertake

those rescues with the greatest chance of success, or at least not to undertake those known

to be highly unlikely while others wait.

In light of these considerations, Roache’s example fails to show that we are wrong to

eschew options known to be highly unlikely in favour of other more likely options. But

the example does show that highly improbable, but highly valuable possibilities, may still

make moral demands on us. However, these are demands that must be weighed among

the many demands of other social, scientific and technological options. Roache

acknowledges that some projects will be unacceptably speculative and, given resource

constraints, more worthwhile options should be pursued in their stead. One could,

therefore, think that she endorses the kind of weighting that favours options addressing

current or imminent concerns over those that are distant and speculative (other things

being equal).

Nevertheless, she argues against this focus on “socially beneficial” outcomes, the

judgment of which she says is highly fallible, and influenced by factors such as fads,

prejudice, bias, and misconception. We would, therefore, have reason to view such a focus

as being shortsighted and misguided. To illustrate this point she uses the example of

bacterial antibiotic resistance, which she rightly states could render all antibiotics

ineffective against bacterial infection. She argues that this is not a current problem, since

Speculative Ethics: Valid Enterprise or Tragic Cul-De-Sac? 153

there are still drugs that can treat the relevant diseases. She is right that there are drugs or

drug combinations that can be effective in treating antibiotic resistant diseases. She is also

correct in asserting that the emergence of bacterial strains that are resistant to all

antibiotics and their combinations is not a current problem, and therefore could be

excluded from a moral focus that privileges current over future problems. However, she

is wrong to infer that antibiotic resistance per se is not a current problem, and this

undermines her example.

A brief examination of Staphlococcus aureus is sufficient to reveal this. Penicillin resistant S.

aureus was a significant comorbidity during the influenza pandemic of 1957 and 1958

(Kunin, 1993; Schoenbaum, 2001), and, more recently, Methicillin-resistant S. aureus

(MRSA) was reported to increase mortality during the 2003-2004 and 2006-2007 influenza

seasons by 33 per cent. Meta-analysis of 31 articles published from 1980-2000 revealed that

patients with MRSA infection have significantly greater odds of mortality compared to

otherwise similar patients with Methicillin-susceptible S. aureus (Cosgrove et al., 2003),

despite the fact that at the time, MRSA was uniformly susceptible to treatment with

Vancomycin (which is no longer the case (Hiramatsu, 2001)). S. Aureus is one of many

such bacteria that exhibit rapid development of antibiotic resistance and pose a current

problem to successful treatment. Collectively, these findings show that her example fails

as an example of a merely future problem. The future development of alternatives to

antibiotics is an approach that would be effective for this current problem as well as

solving the future problem of total antibiotic resistance in pathogenic bacteria. Her

example shows that—contrary to her own argument— an emphasis on current or

imminent problems can yield solutions that are not shortsighted, but beneficial now and

in the probable future.

However, the point Roache is making is that there are serious future problems that we are

right to anticipate and devote our efforts towards solving. Although there would be

benefits to a cheap alternative to antibiotics now, even if this were not the case, we would

be right to devote resources to considering the moral implications of total antibiotic

resistance, and making efforts to develop alternatives to antibiotic use. Roache is correct

in stating that a position committing one only to considering current and imminent

problems may fail to prepare for or avoid some harmful future scenarios. It may also fail

to identify beneficial or harmful future scenarios. Despite their improbability, they may

still be significant enough to be worth our current attention. However, given the highly

contingent nature of many speculative possibilities, a prima facie preference towards

consideration of current and imminent problems seems reasonable. Roache’s arguments

against this restriction of scope are only partially successful; she does not challenge the

value of current moral problems and she acknowledges that many speculative

possibilities are so unlikely that attending to them would be a waste of time (Roache,

2008). We are then left in the middle ground of admitting a legitimate place for

speculative possibilities in moral thinking, but requiring that these be weighed against

actual or imminent issues.

How we weigh up the many current and potential future issues that could be attended to

is a difficult question. We suggest that relevant factors include a realistic and scientifically

rigorous assessment of the harms and benefits that each issue contains, and the likelihood

that future aspects might be realized. Roache makes the suggestion that “Reflecting on

where our most important values lie, and how we might work to maximise them, is surely

an important step towards ensuring that ethical concern, and other valuable resources, are

Bioethics in the 21st Century

154

not squandered” (Roache, 2008, p. 326). This is a good suggestion, which is compatible

with the middle-ground arrived at here. It should be noted that multiple values would

also have to be balanced against each other, thus prioritizing is inevitable.

Applying this to cryonics, we may decide, upon careful reflection, that one of our most

important values entails sustaining individual lives through the pursuit of life-extending

technologies such as this. In that case, full-blown cryonics is a live ethical issue, and we

should seriously consider taking steps to realize its potential. However, the highly

speculative nature of cryonics means that we can only have limited confidence that it is a

good means of pursuing that which we value. Moreover, a value that entails life-

prolonging technologies such as this would likely entail the promotion of life-prolonging

possibilities elsewhere. Maximization of this value would arguably require a much

greater focus on more reliable or likely means for prolonging life, such as public health

measures in third-world countries. Revisiting our modification of Roache’s analogy of

rescuing the trapped child may be useful here. In cryonics, there may be a possibility that

the frozen cryonics patients can be ‘rescued’ by future medicine. However, this is a rescue

effort of highly unlikely success, whereas there are other efforts in which success is vastly

more likely. To pursue the unlikely alternative at the expense of those that are so vastly

more likely would amount to irresponsible allocation of resources.

8. Conclusion

The degree to which ethics as a discipline should engage with highly speculative

possibilities is a significant matter at a time when science fact and fiction are becoming

increasingly difficult to disentangle (Jones, 2006). Cryonics has been used as a paradigmatic

example, the extreme nature of which highlights the issues involved for bioethicists. We

have argued that considerable caution is required when approaching all speculative

situations; the more extreme the situation the more cautious the response should be. Even if

it is conceded that speculation can be a useful tool for ethical reasoning, and that the pursuit

of speculative possibilities may in principle be justifiable, it is far from clear that the highly

speculative, like cryonics, offers sufficient likelihood of benefit to warrant consideration, let

alone prioritization ahead of more likely and beneficial future possibilities. Tempting as it

may be for bioethicists to be swept away by the apparently exciting and enticing

possibilities rampant in the literature, moves in the direction of speculative ethics ought to

be made with extreme caution.

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Abstrak Perkembangan sains dan teknologi kini telah mencetuskan inovasi dan penemuan baharu dalam pelbagai bidang. Khususnya dalam penghasilan produk makanan, terdapat trend pemprosesan yang bersifat mesra alam selain daripada permintaan tinggi serta keperluan pasaran terhadap produk terlibat. Antara produk berkenaan adalah penghasilan daging kultur atau daging makmal. Daging ini tidak lagi dihasilkan secara alami melalui penternakan di ladang-ladang, sebaliknya ia dihasilkan di makmal dan kilang. Bahkan ia boleh mendatangkan manfaat yang banyak kepada pengguna. Selain bersifat mesra alam, proses penghasilannya juga ekonomik serta boleh dipelbagaikan gizinya. Biasanya dalam proses pengkulturan daging, terdapat beberapa teknik yang digunakan seperti scaffold structure, organ printing dan tissue culture. Justeru dalam kajian ini, pengkaji hanya akan menfokuskan terhadap penggunaan stem sel berasaskan teknik scaffold structure sahaja. Pengkaji akan meneliti teknik yang digunapakai serta sumber stem sel yang diambil dalam pengkulturan daging. Berasaskan data-data yang dikumpulkan, pengkaji akan menganalisis pandangan ulama terhadap teknik dan produk akhir yang dihasilkan. Ini kerana proses pengkulturan daging berhubungkait dengan pengubahan ciptaan Allah SWT serta sumber stem sel akan memberi implikasi terhadap hukum memakan daging kultur tersebut. Justeru, satu panduan hukum Islam akan dihasilkan berdasarkan penelitian terhadap pengkulturan daging. Kata kunci: pengkulturan daging, daging kultur, hukum Islam, halal dan haram, sains dan teknologi 3 rd Postgraduate Conference on Science and Technology Studies 2014 (22 nd – 23 rd December 2014) Organized by

Patient centred care in diabetology: An Islamic perspective from Iran

Article

Full-text available

May 2013

Patient-centred system of care is essential in managing many disorders such as diabetes mellitus. The cultural and religious context can influence the involvement of patients and their families in such a care. We intend to discuss patient-centred care in diabetology in view of Islam. For more clarification, we will take into consideration a few illustrative lines of argument in detail about situation in Iran. In conclusion, dynamic spirit of Islamic jurisprudence is reflected in its adaptability to change in medical practice. In recent decades, Iranian religious scholars have provided scientists in new fields of science and research with appropriate directions and guidelines. Decree issued by Iranian religious leaders permitting research on stem cells for therapeutic purposes in many disorders including diabetes mellitus is one example. Understanding of the nature of Islam is importance for communication with patients in Islamic countries.

Health Care Ethics Consultation: Nature, Goals, and Competencies: A Position Paper from the Society for Health and Human Values–Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation

Article

Full-text available

Jul 2000

Mark P Aulisio

Patients, families, and health care providers have a right to expect that ethics consultants can deal competently with the complex issues that they are asked to address. The Society for Health and Human Values–Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation explored core competencies and related issues in ethics consultation. This position paper summarizes the content of the resulting Task Force Report, which included nine general conclusions: 1) U.S. societal context makes “ethics facilitation” an appropriate approach to ethics consultation; 2) ethics facilitation requires certain core competencies; 3) core competencies can be acquired in various ways; 4) individual consultants, teams, or committees should have the core competencies for ethics consultation; 5) consult services should have policies that address access, patient notification, documentation, and case review; 6) abuse of power and conflicts of interest must be avoided; 7) ethics consultation must have institutional support; 8) evaluation of process, outcomes, and competencies is needed; and 9) certification of individuals and accreditation of programs are rejected. *For members of the Society for Health and Human Values–Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation, see Appendix 1.

Maintaining respectability and responsibility: Gendered labor patterns among women injection drug users

Article

Full-text available

Jun 2010
Health Care Women Int

Gender-related factors and the social and economic conditions that impact the lives and health of women injection drug users (IDUs) in Chicago are described. Although study participants are highly imaginative and resourceful in terms of income-generating self-sufficiency, they engage in a variety of behaviors that put them at risk of contracting infectious diseases such as HIV and hepatitis B and C viruses. We point out that labor inequalities experienced by women IDUs, together with the gender ideologies that support those inequalities, provide reduced opportunities to practice harm reduction and other health care options.

The Recombinant DNA Debate

Chapter

Dec 1982

Stephen P. Stich

Prospects and Ethics of Stem Cell Research: An Islamic Perspective

Article

May 2007

Hossam E Fadel

Stem cells (SCs) are pluripotent cells that retain the ability to develop into all cell types. This characteristic makes them appealing for use in research with view of therapeutic use, especially in "regenerative medicine." Stem cell sources include the following: 1. Embryonic stem cells (ESCs): These are derived from the inner cell mass of developing embryos. 2. Adult stem cells (ASCs): The best known source of ASCs is the hematopoietic cells of the bone marrow. These have been used clinically with good results in the treatment of leukemias. Very few ASCs may be present in other organs, e.g. the brain. 3. Cord blood: Cord blood is another source of "adult" hematopoietic stem cells. 4. Therapeutic cloning: Therapeutic cloning utilizes nuclear transfer techniques to produce pluripotent SCs with the genome of the nucleus of origin. These cells can be induced to differentiate into replacement cells for transplantation into the individual from whom the original cell was obtained, thus eliminating the requirement of immune suppression. In this paper I will discuss the potential and realized gains of stem cell therapies as well as the potential problems associated with their use. I then will discuss the ethical dilemma that this research entails as it deals with the human embryo. I will discuss the moral status of the embryo and the varying views of ethicists in this regard and then I will discuss the opinion of religious communities and, specifically, the Islamic perspective. Islamically, stem cell research is probably permissible, except for the creation of embryos for the specific purpose of using them only in research. Therapeutic cloning will be Islamically acceptable when the intent is to create tissue/organ from the individual who needs it, the procedure is feasible, and the result is expected to be good. Finally, I will discuss the present status of stem cell research in the United States and the politics that impact it. http://dx.doi.org/10.5915/39-2-5425

"Finely Aware and Richly Responsible": Moral Attention and the Moral Task of Literature

Article

Oct 1985
J Philos

Martha Nussbaum

Nanoscience and Nanotechnology: Assessing the Nature of Innovation in These Fields

Article

Aug 2002

Michael D. Mehta

Sociologists of science and others have long been interested in how advances in science come about, and their potential social and economic impacts. Developments in nanoscience and nanotechnology will provide social scientists with a unique opportunity to explore how scientific activities form de novo. Additionally, scientists will have the opportunity to examine the factors that drive science and technology in certain directions by considering how different models of innovation may explain how the topography of the knowledge-based economy is being shaped by radically new approaches to science.

Identifying Ethical Issues of Nanotechnologies

Article

Jan 2012

Joachim Schummer

Nanotechnology: Awareness and Societal Concerns

Article

Aug 2005
Tech Soc

This study addresses current social and ethical concerns as well as the public's perception of research and development in nanotechnology. Significant efforts have to be made to increase public awareness of this new field in order to avoid unexpected and/or unwarranted backlash. Results from a survey on nanotechnology awareness are presented, showing that only 17% of the respondents were able to identify what nanotechnology is, with 76% of the respondents being men.

Technogenesis Redesigns Phylogenesis: Or, When Liberation Biology Meets Our Posthuman Future

Article

Dec 2007

Dinesh Sharma

Introduction: Regenerative Medicine at the Heart of the Culture Wars

Article

Jan 2009

King Tak Ip

Regenerative medicine is rich with Promethean promises. The use of human embryonic stem cells in research is justified by its advocates in terms of promises to cure a wide range of diseases and disabilities, from Alzheimer’s and Parkinsonism to the results of heart attacks and spinal cord injuries. More broadly, there is the Promethean allure of being able to redesign human biological nature in terms of the goals and concerns of humans. Needless to say, these allures and promises have provoked a wide range of not just moral but metaphysical reflections that reveal and reflect deep fault lines in our cultures.

Stem Cells: Ethical and Religious Issues

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