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Realizing Bioethics' Goals in Practice: Ten Ways "Is" Can Help "Ought"
Abstract
A familiar criticism of bioethics charges it with being more conceptual than practical--having little application to the "real world." In order to answer its critics and keep its feet on the ground, bioethics must utilize the social sciences more effectively. Empirical research can provide the bridge between conceiving a moral vision of a better world, and actually enacting it.
... However, some authors claim that social sciences are not just a 'handmaiden' that simply documents 'facts' that ethicists use in their normative arguments. Empirical work, they say, can be used to develop a critique of ethical concepts and principles [39][40][41], to contribute to the process of justifying moral principles, and to help determine which moral principles and subsequent policies are more appropriate in given contexts [42][43][44]. Additionally, Sugarman et al. [45] found an increase in empirical studies which address the topic of ethical theory (broadly construed) such as moral development, moral obligation, ethical analysis, philosophy, feminism and humanism. ...
... Our list of objectives starts with modest expectations towards the contribution of empirical research in the overall bioethical endeavor and moving towards a high ambition. We arrived at a different list from other classifications of ERiB because we tried to strike a balance between feasibility and covering diversity (see [14,15,18,42]). While some objectives of empirical research were treated distinctively in the literature, we decided to put them in the same category. For example, Sulmasy and Sugarman [14] conceptualized the goal of testing norms and assessing likely consequences as distinct. ...
... With the last objective (h), we invited the participants to reflect upon the goal of using empirical research as a source of morality. This goal was not explicitly present in the literature, but it builds on ambitious use of empirical research to help look for inspiring new sources of morality [17,18,42,43,46]. We thus wanted to examine how the participants would react to one of the most ambitious objectives of ERiB. ...
Background:
This is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.
Methods:
Using qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis.
Results:
From the eight objectives presented to the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.
Conclusions:
Our results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry.
... 2 While the relation between normative and empirical bioethics remains a matter of debate, the importance of empirical inquiry for bioethics is widely recognised. 3 In this paper, we argue that digital methods can expand the capabilities of empirical bioethics by turning the online space into the object of robust empirical research. ...
... One primary contribution of empirical bioethics has thus consisted in giving a voice to ethical concerns around controversial issues in medicine, science and technology. 3 In this respect, empirical bioethics has provided insight into the ways ethical issues relate to their specific sociological, political and cultural contexts, as well as how various actors articulate their perspectives around a given ethical question. 2 The question of whether and how insight from empirical bioethics can directly contribute to normative analysis and decision making remains unsettled. ...
... For this reason, digital methods can be particularly useful to shed light on otherwise disfranchised discursive communities and on the way they spontaneously articulate their moral experience in relation to bioethically relevant issues. 3 As we show below, digital methods can reconstruct how moral attitudes of the public or specific stakeholders evolve over timefor instance on social media platforms-enabling the analysis of what triggers people to acquire and manifest publicly their moral attitudes in an issue of bioethical interest. This is possible thanks to the fact that users of social media platforms leave traces of their past interactions that are accessible through computational methods. ...
The online space has become a digital public square, where individuals interact and share ideas on the most trivial to the most serious of matters, including discussions of controversial ethical issues in science, technology and medicine. In the last decade, new disciplines like computational social science and social data science have created methods to collect and analyse such data that have considerably expanded the scope of social science research. Empirical bioethics can benefit from the integration of such digital methods to investigate novel digital phenomena and trace how bioethical issues take shape online.
Here, using concrete examples, we demonstrate how novel methods based on digital approaches in the social sciences can be used effectively in the domain of bioethics. We show that a digital turn in bioethics research aligns with the established aims of empirical bioethics, integrating with normative analysis and expanding the scope of the discipline, thus offering ways to reinforce the capacity of bioethics to tackle the increasing complexity of present-day ethical issues in science and technology. We propose to call this domain of research in bioethics digital bioethics .
... There is a well-established body of literature that explores the importance [19][20][21][22] of empirical research in bioethics. It is acknowledged that empirical research and the data it generates can make 'bioethics more effective' [21, p. 41] by connecting the conception of the idea of a better world with the actual world [4,21]. ...
... There is a well-established body of literature that explores the importance [19][20][21][22] of empirical research in bioethics. It is acknowledged that empirical research and the data it generates can make 'bioethics more effective' [21, p. 41] by connecting the conception of the idea of a better world with the actual world [4,21]. While there will be those who argue that empirical research data cannot determine what is ethically right or wrong [4,23], it may also be argued that 'ethical theory, ethical norms, and values are nurtured and shaped by empirical knowledge' [4, 23, p. 71]. ...
Empirical data can be an extremely powerful and influential tool in bioethical research. However, when researchers or policy makers look for answers to ethical questions by engaging with empirical research, there can be a tendency (conscious or unconscious) to shape, report, and use empirical research in a way that confirms their own preferred ethical conclusions. This skewing effect - what we call ‘normative bias’ - is often so subtle it falls short of clear misconduct and thus can be difficult to call out. However, we argue that this subtle influence of bias has the potential to significantly influence debate and policy around highly sensitive ethical issues and must be guarded against. In this paper we share the lessons we have learned through a journey of self-reflection around the effect that normative bias can have when reporting on and referring to empirical data relating to ethical issues. We use a variety of papers from our area of the ethics of routine prenatal screening to illustrate these subtle but often powerfully distorting effects of bias. Our aim in doing so is not to criticise the work of others, as we recognise our own normative bias, but to improve awareness of this issue, remind the need for reflexivity to guard against our own biases, and introduce a new criterion - the idea of a ‘limitation prominence assessment’ - that can work as a practical way to evaluate the seriousness of the limitations of an empirical study and thus, the risks of the study being misread or misinterpreted through superficial reading.
... Bioethics has made a compelling and illustrative case for the role of experience and of empirical research in modern ethics theory because challenging moral aspects of health situations simply cannot be dealt with effectively and meaningfully in the abstract [1] and without due attention to experience and evidence about experience [2]. Indeed, bioethicists and those directly involved in addressing difficult moral situations in health care settings must have a full appreciation of the contexts within which they operate and the concrete possibilities offered by different action scenarios in a given context [3]. ...
... We have explored [41][42][43] and will continue in future publications to explore the proposed methodology for the use of certain concept-principles in specific contexts. Some other scholars have proposed similar methods for conceptual analyses but they have not drawn explicitly from the more foundational insights of 2 As explained below, the concept component refers mostly to the apprehension of a given experience through the lens of valuations, while the principle component refers to the commanding and guiding orientation stemming from this experience. The function of a given ethics concept-principle is both to refer to a given kind of experience and to state a normative force that helps promote (or prevent) that experience. ...
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Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role(s) it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: (1) function identification, (2) function enrichment, and (3) function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing (eudaimonia). We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts.
... On this view, philosophy and theology are still the normative core disciplines, and empirical research is assigned only an auxiliary role (Haimes 2002). By side-lining the empirical sciences, the critics say, practical ethics has lost much of its relevance to the resolution of ethical problems (Solomon 2005). ...
... Since it is obvious that consequences of actions or policies matter in ethics, an agent needs well-founded data about the effects of his options. Scientists are right in insisting that ethicists should not rely on their personal opinions or anecdotal evidence about the consequences of their options but should use reliable data provided by the sciences (see Solomon 2005 In an article on the tension between the paternalistic model and the autonomy paradigm of medical decision-making, Kon (2009) discusses the principle that patients with advanced dementia should be given tube feeding. He claims that this principle can be refuted and modified on the basis of empirical research. ...
This article is concerned with the role empirical research can play in normative practical ethics. There is no doubt that ethical research requires some kind of collaboration between normative disciplines and empirical sciences. But many researchers hold that empirical science is only assigned a subordinate role, due to the doctrine that normative conclusions cannot be justified by descriptive premises. Scientists working in the field of ethics commonly hold, however, that the empirical sciences should play a much bigger role in ethical research. The aim of this paper is to show that empirical sciences can play a substantive role in normative ethics, with no illicit inferences from is to ought. To achieve this aim, I explain (in "The Is-Ought Problem Explained" section) Hume's thesis. In the following sections, I am concerned with different uses of empirical data that do not imply an illicit inference from descriptive premises to a normative conclusion. The article demonstrates that there are many modes of ethical reasoning that allow for a substantive use of empirical data, and it also shows the importance of Hume's thesis for clarifying ethical reasoning.
... Not all researchers engaging in empirical research in bioethics will agree with this narrow understanding of empirical bioethics, as it may constrict the aims of empirical research projects in bioethics (which can be rather broad, see e.g. [19][20][21]). Nonetheless, it is assumed in the following that empirical research in bioethics "is not an end in itself," but rather "a required step towards a normative conclusion or statement" [22, p. 1]. ...
It can be assumed that value judgements, which are needed to judge what is ‘good’
or ‘better’ and what is ‘bad’ or ‘worse’, are involved in every decision-making process. The theoretical understanding and analysis of value judgements is, therefore, important in the context of bioethics, for example, to be able to ethically assess real decision-making processes in biomedical practice and make recommendations for improvements. However, real decision-making processes and the value judgements inherent in them must first be investigated empirically (‘empirical bioethics’). For this to succeed, what exactly a ‘value judgement’ is and of what components it might consist must initially be theoretically clarified. A corresponding conceptual model can then support or even enable empirical data collection and analysis and, above all, subsequent ethical analysis and evaluation. This paper, therefore, presents a value judgement model with its theoretical derivation. It also illustrates its application in an interview study of decision-making between animal experimentation and alternative methods in the context of biomedical research. Though the model itself can be theoretically deepened and extended, the application of the model works in general and helps to uncover what value judgements can enter into decision-making. However, the empirical methods, for example, qualitative interviews, can also be better oriented towards eliciting value judgements (as understood according to the model). Further applications of the model to other topics or by means of other empirical methods are conceivable.
... Comserve is intended to be an HBD mitigation strategy, however, this research reinforces the concern that 'the long-term effects of CS [community service]… may even be exacerbating rather than lessening the tendency of young doctors to leave the country' (Reid 2001, 333). Taking a critical realist stance with an empirical bioethics method has allowed for an assessment of where ethical priority lies, as well as a testing, and possible disproving, of the claim that 'comserve mitigates HCW maldistribution' (Solomon 2005). ...
The health ‘brain drain’ (HBD) is an issue of significant global bioethical concern, resulting in severe maldistribution of healthcare workers (HCWs) and gross inequities in health service provision. The ethics of the HBD and its possible mitigation strategies are, however, complex and areas of active ongoing bioethical debate. South Africa faces a dire and worsening HBD crisis, and use a mitigation strategy of compulsory community service, or ‘comserve’, for most HCWs. While there is some literature on HCWs’ comserve experiences and the various ‘push and pull’ factors affecting their migratory decisions, there is a notable gap regarding their personal values, beliefs and ethics regarding the HBD and comserve, which, as this research supports, play a prominent role in migratory decisions. This empirical bioethics research aims to explore this among a group of South African doctors who recently completed comserve, as well as how their experiences affected their situation on the individualist-collectivist continuum. This was done qualitatively using semistructured interviews with 11 participants and analysed using reflexive thematic analysis under a methodology of critical realism. Themes identified were ‘Special Duties’; ‘Freedom and Autonomy’; ‘Justice and Accountability’; and ‘The Individualist-Collectivist Continuum’. Participants use a variety of ethical theories to discuss the HBD and oppose or support comserve, which play a significant role in their migratory decisions. Most find the policy to be theoretically ethically justifiable but note that procedures undermine this. There are also several factors that appear to affect participants’ position on the individualist-collectivist continuum, with some paradoxical effects on the HBD.
... In her paper, Realizing Bioethics' Goals in Practice: Ten Ways "Is" Can Help "Ought," Mildred Z. Solomon provides several reasons for this disconnect. 37 The general theme is the importance of empirical research -the need to find a balance between normative assumptions and empirical evidence -and how policymakers can, in turn, use such evidence to fine-tune the policy design process. Contractualism can prove especially useful to bridge the divide between is and ought. ...
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ABSTRACT
Public health ethics has been contingent on a political landscape leading to several operational hurdles, especially during global health emergencies. Several scholars have pointed out that liberal decision-making has prevented public health institutions from achieving their goals. Thus, the need for a substantive outlook on public health has never been stronger. First, this article highlights the ethical tension and limitations of a presumptive approach to public health that a vaccination policy might produce in a liberal political landscape. Second, influenced by the works of Angus Dawson, this article emphasizes the importance of a substantive approach to public health, especially in a post-COVID era. Last, it looks at how TM Scanlon’s theory of contractualism aids in framing a substantive approach to health policy design and the added advantages of the theory.
INTRODUCTION
A public health intervention like a vaccination program for COVID-19, let alone a mandatory one, faces difficulties in implementation as it presents a clash between the role of the government and liberty of its citizens.[1] The clash stems from public health operating in a liberal political landscape that accords great regard for individual liberty. The government, in good conscience, is right in feeling morally obligated to act in ways that serve to prevent the pandemic from escalating. To represent the citizens, governments and policymakers prioritize achieving and maintaining herd immunity. The tension of the state versus individual liberty questions the extent to which governments can go to implement a vaccination policy.
In trying to balance the considerations of individual liberty and the scope of the state to impose an intervention, the Nuffield Council on Bioethics came up with a design known as the ‘intervention ladder.’[2] The takeaway from the intervention ladder is that the state has the burden of proof in justifying reasons for implementing a particular policy.[3] Such justified trade-offs envisioned from the intervention ladder have guided policymakers in their attempt to design and shape interventions. However, public health ethics and even the intervention ladder view public health through a presumptive or a moderate liberal lens.[4] In a presumptive approach or a moderate-liberal approach to public health, policymakers regard values like liberty or autonomy as more prominent when weighed against values like creation of public goods and their maintenance.[5] A libertarian approach favors liberty and autonomy even more strongly.
The substantive view of public health holds that values, such as liberty and autonomy, do not automatically hold precedence over community-oriented values such as public goods creation.[6] Some have critiqued the intervention ladder endorsed by the Nuffield Council of Bioethics. Angus Dawson remarks that the intervention ladder as a metaphor prevents the act of climbing. He claims the ladder assumes that liberty is the only guiding principle in policymaking. Such a view neglects any responsibility the citizens have in achieving public goods and maintaining them.[7]
The emphasis on the drawbacks of a presumptive approach, especially in a situation like the COVID-19 pandemic, leads us to question should public health undergo a redefinition? The approach in public health focusing on non-interference stems from traditional clinical bioethics.[8] However, I argue that public health ethics in a pandemic should accord less emphasis to individual liberty and evaluate every ethical value on a level playing field. Individual liberty provides less platform for action in situations where the community has not established herd immunity. Accountability for the harm principle and maintenance of public goods override concerns surrounding liberty.[9] Angus Dawson argues that with more participation in a vaccination program, protection of public goods from disease can be created faster.[10]
Characterizing public health as an antagonist to individual liberty undermines the confidence in public health institutions and interventions for which public trust is vital. Although the government may propose a mandatory vaccination policy when voluntary measures fail to meet public health requirements, clear scientific evidence and accountability for public welfare should be the guiding principle. Thus, resetting the parameters gauging a public health intervention is the starting point to prepare for future pandemics.
In Resetting the Parameters, Angus Dawson suggests that utilitarianism or contractualism could serve as philosophical frameworks that may aid in framing a substantive approach to public health.[11] Evaluating utilitarianism and contractualism according to the COVID-19 facts would help clarify which is better suited to framing a substantive public health approach.
l. Is Utilitarianism Substantive?
Under utilitarianism, the morbid circumstances of the COVID-19 pandemic urge us to act in ways that translate to maximizing the overall good. Utilitarianism is a philosophical theory that prides itself on maximizing the best of outcomes for the maximum number of people. In an ideal utilitarian framework, a morally right act does good for all. Utilitarians consider utility the single determining variable that should guide actions.[12] The actionable aspect of a utilitarian framework is its ability to quantify thresholds or markers that mostly dwell in the abstract.
In Utilitarianism and the Pandemic, Savulescu et al. outline certain determinants as aids in applying utilitarianism.[13] Looking at the aids in the context of a mandatory vaccination policy in light of COVID-19, shows some pitfalls of utilitarianism.
The first utilitarian aid is to save the maximum number of lives.[14] Rightly so, an intuitive starting point in a pandemic with striking mortality rates is attempting to save the most lives. However, implementing and justifying a policy with the aim of saving the highest number of lives is complex. While a high number of deaths is a concern, it is reductionist to concentrate only on the end goal and not the means through which such a goal is attained.
The second utilitarian aid is the length of life.[15] The length of benefit gained from an outcome is crucial for utilitarians. The duration of a benefit determines the quantity of good produced. As an extension, younger people should then, theoretically, count for more than older individuals in prioritizing benefits. Such prioritization has been a matter of concern during the COVID-19 pandemic. While it is true that younger people might tend to benefit more, the pathology of COVID-19 goes against such logic. Elderly populations have experienced disproportionately more severe cases. Therefore, prioritizing youth when the elderly are suffering more of the harm would be ethically contentious.[16]
The third utilitarian aid is the quality-of-life post-intervention.[17] Through measures such as QALYs and DALYs,[18] utilitarians have attempted to quantify each individual's quality after an intervention. This quantification can result in connecting an individual’s quality of life to their social worth. From a utilitarian viewpoint, a person's ability to produce relevance in society becomes a key determinant in shaping public policy. By extension, people born with disabilities such as mental illness or late-stage dementia can be overlooked merely because they lack "social value.”[19] And yet, “taboo trade-offs occur when we are forced to put a finite monetary value on these sacred values [life, health, ability], when we acknowledge that there is a maximum ‘price’ that we want to pay to uphold values that should be of ‘infinite’ value.” [20]. As such, it is unethical to place a value on someone's life based on the duration or quality of life they may have after an intervention.
Besides creating difficulty in assessing the quality of life, measures such as QALYs do not address the nuances in providing healthcare. In Economic Evaluation of Mental Health Interventions, Luyten et al. discuss several operational changes that account for these nuances.[21]
Utilitarians believe in a moral indifference between actions and omissions as the fourth aid.[22] It does not matter how a result is achieved as long as it benefits the common good. Putting forward a bad policy is the same as not putting forward a policy. In the ever-changing and unpredictable dynamics of the COVID-19 pandemic, actions and omissions have different moral implications. Equating them often places an unfair burden on lawmakers, leaving them emotionally and morally exhausted as they weigh the advantages and risks of various outcomes.
Actively avoiding social biases, feelings, intuitions, and heuristics is the fifth aid.[23] The pandemic elicits strong feelings and aggressively tests beliefs. During the pandemic, some profoundly troubling ethical dilemmas stemmed from bias. In a utilitarian system, a mandatory vaccination policy aimed at crossing the threshold for herd immunity may overlook groups of people who are vulnerable due to a lack of access to the social determinants of health. Attempting to avoid feelings and intuitions all the time does not always result in the creation of a fair policy. Anti-vaccination activists use emotion to further their cause, hence it is critical that politicians consider the feelings at stake for the general public when enacting a mandatory vaccination policy.
While utilitarianism has benefits such as developing simple operationalizable concepts, providing a quantitative check, and a balance sheet of risks and benefits, it is based on an ethical dystopia. Utilitarian policies can treat people as a means to an end by focusing solely on outcomes. Utilitarianism rests on a presumptive outlook toward public health by replacing liberty with utility. It ignores fair and just distribution and allocation of resources. Utilitarianism is not the most ethical approach to pandemic vaccination policy.
ll. Is Contractualism Substantive?
The libertarian and utilitarian frameworks assume positive and negative connotations to different actions. They hold that certain acts are right and certain acts are wrong. A libertarian might hold that unnecessary infringement of individual liberty is not acceptable, while a utilitarian might be of the opinion that actions that contribute to disutility are unfavorable for the promotion of the greatest happiness principle.[24]
Contractualism is a philosophy that values the social contract. A contractualist approach begins its discourse by arguing that actions have inherent neutrality.[25] By saying that, “being valuable is not always a matter of being ‘to be promoted’”[26], Scanlon does not neglect the value of certain actions but urges us to respond to value through other means, as well as to find value in plurality. In What We Owe to Each Other, Scanlon finds morality through the ability to reason while attributing inherent neutrality to our actions. A discourse in contractualism does not begin by presuming that values such as liberty or autonomy hold precedence among other ethical values, i.e., it is not presumptive in its approach. Instead, he locates morality in the ability to reason and find justifications for certain actions. Thus, compared to utilitarianism, contractualism allows for a substantive approach by holding all the relevant ethical values in a level playing field. Liberty would gain precedence when justifications for safeguarding it are strong and cannot be reasonably rejected. The same goes for other values, such as promoting public goods.
In short, an action is termed wrong when “the principle that allows for it, can be reasonably rejected.”[27] For Scanlon, justifiability to others is the normative determinant of right or wrong.[28] He proceeds to say that the value of justifiability is the underlying premise of our duties. Additionally, Verweij argues that treating people rationally occurs by treating them in “ways they cannot reasonably reject.”[29] By disregarding any a priori assumptions about the importance of different values, people can find and construct values that cannot be reasonably rejected as they would be justified. Scanlon believes that this can be attained if we reflect on what we owe to each other.
lll. The Inherent Moral Neutrality Allows for a Substantive Approach
A contractualist approach has implications for framing a substantive approach to public health. These values have been adapted from Scanlon and Verweij, and the elaboration has been framed in the context of COVID-19.
The inherent neutrality of principles that contractualism holds becomes crucial while devising a public health intervention. The COVID-19 pandemic presents a situation where otherwise acceptable ethical principles require scrutiny. A blank state where there are no a priori principles that suggest which acts are morally justified and which are not helps us navigate the operational principles involved in a vaccination policy. Thus, values such as liberty, utility, and autonomy are viewed on the same level as the creation of public goods, fairness in contribution, and avoiding collective harm.
a. Arriving at Principles
Starting with the inherent neutrality, the state, policymakers, and the public can identify ethical principles that would form a part of the vaccination policy smorgasbord. In a public health framework where negotiation is a crucial aspect in its implementation, it is important that all the stakeholders aim to find principles that are acceptable for everyone. This would culminate with principles of action that would produce the least number of complaints by all the parties involved. If an individual has very strong reservations against a principle, these cannot be outweighed by weaker reservations held by others.[30]
b. Reasonable Rejection as a Marker of Deliberation
A mandatory vaccination policy in a contractualist framework would then have to incorporate reasonable rejection. A framework based on reasonable rejection includes a variety of moral considerations that shape well-being and provide a basis for fairness, choice, and responsibility. Scanlon makes an important remark in the thesis of What We Owe to Each Other: the acceptability of a principle depends on a one-by-one assessment of the strength of individuals' reasons for rejecting the principles compared to any existing alternatives. In other words, for Scanlon, what is foundational for contractualism is not minimizing what is undesirable but constructing principles no one can reasonably reject.
In the context of COVID-19, a person should be able to justify the level of precaution he takes to anyone who would bear the risk of exposure. Each individual would then have strong reasons for contributing to herd immunity with regard to their duty to protect the vulnerable. The justification to forego vaccination would need to be strong.[31] The difference in a contractualist approach is that it provides a platform for valid concerns from the public. This allows more room for dialogue and for individual liberty, which seems to form a significant part of the critique. A plan of action that allows for individual concerns such as safety, efficacy, and strong medical reasons to forego vaccination encourages inclusivity in policymaking.
Another public concern is that public health institutions have alienated themselves from society in general.[32]A dialogue between the stakeholders would remedy such a notion and help redefine public health according to how Dawson and Verweij view “public”– as a social entity/target as well as a mode of intervention (requiring collective action).[33]
Contractualism, like the rest of the ethical frameworks, has its own set of critiques. In Obligatory Precautions Against Infection, Marcel Verweij argues that a contractualist theory inadvertently ends up asking for excessive precautions. The first claim that contractualism asks for excessive precautions arises from the fact that a contractualist approach does not consider the consequences of individual actions.[34] He believes that since consequences are not weighted, one individual’s wish to forego precautionary measures does not justify another’s non-compliance towards precaution, culminating in the other having to take excessive precautions. He also criticizes the contractualist deliberation for its failure to focus on the consequences of individual acts but on creating universalizable principles.[35]
While this may seem true, such a conclusion rests on the fact that the consequences of individual acts are not weighted. However, an excerpt from Verweij’s paper offers evidence that contractualism does weigh individual acts:
Suppose that we both aim to find moral principles that regulate our interaction and that can be accepted by both of us. If you then propose a principle that imposes many risks on me but none for you, then it would be reasonable if I were to reject it (especially if there are alternative principles that would yield much lower risks).[36]
Both a consequentialist approach and a contractualist approach share the language of risks and burdens. For the utilitarian, risks and burdens are consequences of an action, whereas, for the contractualist, they are consequences of accepting or rejecting a principle. In the excerpt above, when an individual assesses the risks imposed, a consequentialist way of thinking is incorporated in contractualism and consequences to individuals do matter and are weighed. Verweij’s contention that a contractualist approach does not focus on individual consequences is not supported, and, as a logical extension, the argument of excessive precautions begins to fade.
Being vaccinated would absolve us of having to take excessive precautions. Upon crossing the threshold of herd immunity, excessive precautions such as masks, social distancing, rigorous testing pre- as well as post-travel, and obsessively checking our phones for exposure can be done away with. The COVID-19 pandemic has immersed us in routines of excessive precautionary measures that it has become normalized for most of us. Thus, being vaccinated and covering society with a blanket of herd immunity removes the need for excessive precautions.
lV. Bridging What “Is” and What “Ought” To Be
Although contractualism presents a perspective that best suits a substantive approach to public health, it appears desirable only in theory. There exists a distinct reality outside of academia – politics, societal engagement, and governance reflect a different picture. This can be thought of as the gap between the is and the ought. We could envision and claim that a mandatory vaccination policy ought to be implemented in a certain manner, however, it might not be.
In her paper, Realizing Bioethics’ Goals in Practice: Ten Ways “Is” Can Help “Ought,” Mildred Z. Solomon provides several reasons for this disconnect.[37] The general theme is the importance of empirical research – the need to find a balance between normative assumptions and empirical evidence – and how policymakers can, in turn, use such evidence to fine-tune the policy design process. Contractualism can prove especially useful to bridge the divide between is and ought. Theories of libertarian philosophy and utilitarianism rest on a design based on a normative approach that values liberty and utility and should guide the policymaking process. However, contractualism separates itself from these theories since constructing principles justifiable for all, and the idea of reasonable rejection must rely on empirical evidence. Engagement between various stakeholders and recognizing the plurality in values helps bridge the disconnect between the is and the ought. This is more important in the context of a mandatory vaccination policy since its requirement arises only if voluntary vaccination policies fail. Knowing why vaccination rates are low and how better to reach herd immunity will be important empirical evidence that can fine-tune the policy.
In Re-enchanting Democracy as a Mode of Governance, Patsy Healey acknowledges that a struggle for political change often focuses on installing new policy designs.[38] Healey provides a list of qualities to keep in mind when designing a more people-centered policy initiative.
The first quality is recognizing a shared, diverse, and conflictual political community where distributive justice is vital. The second is to foster is respect for different arguments, positions, and feelings— considering groups with conflicting values as adversaries but not enemies. The third quality is that of an ‘intelligent’ and multi-sided discussion of issues and reasoning ‘in public.’ The fourth is the fostering of respect for the role of the government while simultaneously recognizing the complexities of interactions. The fifth, and a key value in the context of the COVID-19 pandemic, is fostering respect for people who perform public services. Liberalism and utilitarianism create combative ethical discourse around those qualities, while contractualism could elevate shared public values. While liberal democracies arguably have the makings of those qualities, public engagement must be fostered at an intellectual level to promote cohesion.
Another important aspect to consider is the question of what a framework should aim to answer. In Building an Ethical Framework for COVID-19 Resource Allocation: The How and Why, Angus Dawson addresses the goal of a framework, especially at the time of a pandemic.[39] He stresses the importance of context in constructing a framework and urges to engage with a diverse group of people. Value-laden normative approaches such as the libertarian and utilitarian frameworks provide less opportunity for different stakeholder claims. Dawson then argues that explicit discussions provide more clarity and help policy makers better understand the role of context in shaping a framework. Dawson asserts that a frame chosen sympathetically can help the public better appreciate the moral content involved in deliberation, whereas aiming for goals such as liberty and utility is a distraction from the workings of reality.
In evaluating stakeholders, those with lower incomes often are unable to work remotely. They face a greater risk of COVID-19 due to workplace exposure as well as commutes and living conditions.[40] Although a mandatory vaccination policy has the clearly defined goal of achieving herd immunity, ensuring distributive and procedural justice should not be viewed as being mutually exclusive.
CONCLUSION
Societal change relies on justifiable goals, policies, and a multitude of viewpoints. As such, a contractualist approach best accommodates a multitude of views of what we owe each other. Moving forward, if pandemic-type circumstances do disseminate within the constructs of our society, public policy should further consider contractualist approaches as a healthy, inclusive means.
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[1] Luyten, Jeroen. "Mutual Moral Obligations in the Prevention of Infectious Diseases." In Justice, Luck & Responsibility in Health Care, pp. 85-100. Springer, Dordrecht, 2013.
[2] Council, Nuffield Bioethics. "Public Health: Ethical Issues." Nuffield Council on Bioethics (2007)
[3] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal of Medical Ethics 42, no. 8 (2016): 510-513.
[4] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011.
[5] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19.
[6] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011.
[7] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal Of Medical Ethics 42, no. 8 (2016): 510-513.
[8] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011.
[9] Savulescu, Julian. "Good Reasons to Vaccinate: Mandatory or Payment for Risk?." Journal of Medical Ethics 47, no. 2 (2021): 78-85.
[10] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011.
[11] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19.
[12] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[13] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[14] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[15] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[16] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171.
[17] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[18] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53.
[19] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171.
[20] (Luyten and Denier, 2019, p.10)
[21] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53.
[22] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632.
[23] Savulescu, et al.
[24] Mill, John Stuart. "Utilitarianism, ed. George Sher." (2001).
[25] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161.
[26] Scanlon 2003 p.159)
[27] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335.
[28] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161.
[29] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335.
[30] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335.
[31] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335.
[32] Financial Times, 2021, “Covid is the Enemy, Not the Government” Sunil Jain April 26 Accessed 14 May 2021 https://www.financialexpress.com/opinion/covid-is-the-enemy-not-the-government/2240340/
[33] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011.
[34] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335.
[35] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335.
[36] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335.
[37] Solomon, Mildred Z. "Realizing Bioethics' Goals in Practice: Ten Ways “Is” Can Help “Ought”." Hastings Center Report 35, no. 4 (2005): 40-47.
[38] Healey, Patsy. "Re-enchanting Democracy as a Mode of Governance." In Connections, pp. 61-78. Routledge, 2017.
[39] Dawson, Angus. "Building an Ethics Framework for COVID-19 Resource Allocation: The How and the Why." Journal of Bioethical Inquiry 17, no. 4 (2020): 757-760.
[40] Schmidt, Harald, Lawrence O. Gostin, and Michelle A. Williams. "Is it Lawful and Ethical to Prioritize Racial Minorities for COVID-19 Vaccines?." Jama 324, no. 20 (2020): 2023-2024.
... It contends that by exploring the views of professionals with different backgrounds across the aetiological divide we might help to inform the ethical debate, at least by situating moral principles and obligations within the practical reasoning of the very individuals who should enact those principles and fulfil those obligations [23,24]. Further, it builds upon the assumption that exploring such views may help bioethicists to redefine their arguments by considering real-world implications of principles and obligations [25]. ...
Background
The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis.
Methods
Semi-structured individual interviews with two groups: researchers employed in the National Health Service (NHS) or a university in England ( n = 14), and mental health professionals employed in NHS mental health services ( n = 14). This article compares results in the two groups (total n = 28 ).
Results
This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing—which includes acquisition, communication, and use of—neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered—that is, communicated and used—in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals’ perception of ethical principles and moral obligations.
Conclusions
This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health.
Trial registration
The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255.
... We outlined four such activities in the original paper, but one can delineate the empirical from the ethical in ways that give shape to an even broader range of research activities e.g. [5,6]. When we embarked on this project, we naively thought that we could make progress in obtaining agreement about methodological, rather than broader research, standards in empirical bioethics. ...
This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of 'integrating' empirical methods and ethical argument as a standard for research practice within empirical bioethics.
... Much ink has been spilled in recent years either extolling or critiquing the rise of the 'empirical turn' in bioethics [1][2][3]. Whilst some commentators debate whether or not EB is a good or necessary thing [4,5] others have articulated methods and methodologies for conducting empirical bioethics research and used them [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20]. ...
Background:
This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds.
Methods:
The consensus process used a modified Delphi approach.
Results:
Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise).
Conclusions:
Through articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of practice of empirical bioethics research can develop and evolve further.
... Mildred Solomon has identified three different ways in which empirical research can be used in bioethics. Firstly, empirical studies can help facilitate the move from ethical analysis to ethically justifiable behavior; secondly empirical data can be used to enhance ethical analysis and justification (this involves testing consequentialist claims), and thirdly it can be used to identify and document new moral dilemmas (16). However, it must be emphasized that empirical data per se does not determine what is right or wrong although it might be relevant in making such a determination. ...
In the last two decades, there have been numerous calls for a culturally sensitive bioethics. At the same time, bioethicists have become increasingly involved in empirical research, which is a sign of dissatisfaction with the analytic methods of traditional bioethics. In this article, I will argue that although these developments have broadened and enriched the field of bioethics, they can easily be construed to be an endorsement of ethical relativism, especially by those not well grounded in academic moral philosophy. I maintain that bioethicists must resist the temptation of moving too quickly from cultural relativism to ethical relativism and from empirical findings to normative conclusions. Indeed, anyone who reasons in this way is guilty of the naturalistic fallacy. I conclude by saying that properly conceptualized, empirical research and sensitivity to cultural diversity should give rise to objective rational discourse and criticism and not indiscriminate tolerance of every possible moral practice. Bioethics must remain a normative discipline that is characterized by rigorous argumentation.
Keywords: Ethics, Cultural sensitivity, Empirical bioethics, Ethical relativism, Naturalistic fallacy
... As such, the typology proposed was based on differentiating the aims of different kinds of bioethics scholarship and the associated methods. Critical voices were published alongside the article, which challenged both the process, the scope, and the conceptual starting point and the purpose/value of the classification activity [3][4][5][6]. ...
In 2014, the editorial board of BMC Medical Ethics came together to devise sections for the journal that would (a) give structure to the journal (b) help ensure that authors' research is matched to the most appropriate editors and (c) help readers to find the research most relevant to them. The editorial board decided to take a practical approach to devising sections that dealt with the challenges of content management. After that, we started thinking more theoretically about how one could go about classifying the field of medical ethics. This editorial elaborates and reflects on the practical approach that we took at the journal, then considers an alternative theoretically derived approach, and reflects on the possibilities, challenges and value of classifying the field more broadly.
... This process of data collection and analysis reflects a well-recognised methodological tradition in the empirical ethics literature that seeks to use qualitative data to translate well-established ethical principles for medical practice into specific ethical judgements about the real-world issues that arise in particular practice settings. 21,22 Whilst this study concerns practice settings in England, the arguments invoke general ethical considerations that are likely to be applicable to other jurisdictions within which CTOs form part of mental health service delivery. ...
Community treatment orders are a legal mechanism to extend powers of compulsion into outpatient mental health settings in certain circumstances. Previous ethical analyses of these powers have explored a perceived tension between a duty to respect personal freedoms and autonomy and a duty to ensure that patients with the most complex needs are able to receive beneficial care and support that maximises their welfare in the longer-term. This empirical ethics paper presents an analysis of 75 interviews with psychiatrists, patients and family carers to show how these ethical considerations map onto the different ways that community treatment orders are used and experienced in practice. A complex and nuanced account of how the requirements to respect patients’ autonomy, to respect patients’ liberty and to act beneficently should be interpreted in order to make judgements about the ethics of community treatment orders is presented. The article argues that, due to such complexity, no general ethical justification for community treatment orders can be provided, but a justification on the basis of the promotion of patients’ autonomy could provide an ethical reason for community mental health practitioners to make use of a community treatment order in some limited circumstances.
... Thus, despite great promise for improving the quality and costs of care, pragmatic trials raise important ethical questions that require reconsideration of traditional research regulations (Cho et al. 2015;Faden et al. 2013;Johnson et al. 2014;Kass et al. 2013;Largent et al. 2011;Menikoff 2013;Solomon and Bonham 2013). Many authorities have called for greater scrutiny of the issues underlying conceptual analyses of pragmatic trials (DHHS 2011;Garber and Tunis 2009;Partnership to Improve Patient Care [PIPC] 2009; Platt et al. 2014;Solomon 2005). Such data may help to identify how patients and physicians address ethical challenges and whether proposals to surmount them align with their views. ...
Background:
Pragmatic trials comparing standard-of-care interventions may improve the quality of care for future patients, but raise ethical questions about limitations on decisional autonomy. We sought to understand how patients and physicians view and respond to these questions in the contexts of pragmatic trials and of usual clinical care.
Methods:
We conducted scenario-based, semi-structured interviews with 32 patients with end-stage renal disease (ESRD) receiving maintenance hemodialysis in outpatient dialysis units and with 24 nephrologists. Each participant was presented with two hypothetical scenarios in which a protocolized approach to hemodialysis treatment time was adopted for the entire dialysis unit as part of a clinical trial or a new clinical practice.
Results:
A modified grounded theory analysis revealed three major themes: 1) the value of research, 2) the effect of protocolized care on patient and physician autonomy, and 3) information exchange between patients and physicians, including the mechanism of consent. Most patients and physicians were willing to relinquish decisional autonomy and were more willing to relinquish autonomy for research purposes than in clinical care. Patients' concerns towards clinical trials were tempered by their desires for certainty for a positive outcome and for physician validation. Patients tended to believe that being informed about research was more important than the actual mechanism of consent, and most were content with being able to opt out from participating.
Conclusions:
This qualitative study suggests the general acceptability of a pragmatic clinical trial comparing standard-of-care interventions that limits decisional autonomy for nephrologists and patients receiving hemodialysis. Future studies are needed to determine whether similar findings would emerge among other patients and providers considering other standard-of-care trials.
... Rather than attempting to provide a typology or description of ways in which empirical data can inform bioethics (as others have done, for example: Borry et al. 2004; Hope 1999; Holm and Jonas 2004; Kon 2009; Solomon 2005; Sugarman and Sulmasy 2010), this study aims to provide an initial descriptive account, of the way in which authors publishing in medical ethics journals have made use of empirical data reported by others. This is done by undertaking a literature review of papers published in medical ethics journals on the topic of embryo or gamete donation, and exploring how they made secondary use of empirical data. ...
This paper aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others (secondary use). Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the problems that can be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data (from a particular type of study) and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics.
... There is considerable uncertainty about the range and substance of these methodologies, and there remains a difficulty in trying to articulate their aims and content. One standard response has been to articulate typologies that differentiate between different kinds of research endeavour, and a number of useful typologies have, to date, been put forward to describe how philosophical theory and data can be combined [6][7][8][9][10]. DeVries [6], for example, offers a four-part typology that distinguishes between practical research strategies that: (i) use empirical data to describe attitudes toward an issue; (ii) use empirical data to explore the likely or actual consequences of bioethical policies and decisions; (iii) use empirical data to explore the 'implicit normativity' in scientific/clinical practice, and (iv) use empirical data to understand the institution of bioethics. ...
Background
Despite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.
Methods
MedLine, Web of Science and Google Scholar were searched between 15/02/12 and 16/06/13 to find relevant papers. These were abstract reviewed independently by two reviewers with papers meeting the inclusion criteria subjected to data extraction.
Results
33 publications (32 papers and one book chapter) were included which contained 32 distinct methodologies. The majority of these methodologies (n = 22) can be classed as either dialogical or consultative, and these represent two extreme ‘poles’ of methodological orientation. Consideration of these results provoked three central questions that are central to the planning of an empirical bioethics study, and revolve around how a normative conclusion can be justified, the analytic process through which that conclusion is reached, and the kind of conclusion that is sought.
Conclusion
When considering which methodology or research methods to adopt in any particular study, researchers need to think carefully about the nature of the claims they wish to generate through their analyses, and how these claims align with the aims of the research. Whilst there are superficial similarities in the ways that identical research methods are made use of, the different meta-ethical and epistemological commitments that undergird the range of methodological approaches adopted rehearse many of the central foundational disagreements that play out within moral philosophy and bioethical analysis more broadly. There is little common ground that transcends these disagreements, and we argue that this is likely to present a challenge for the legitimacy of the bioethical enterprise. We conclude, however, that this heterogeneity ought to be welcomed, but urge those involved in the field to engage meaningfully and explicitly with questions concerning what kinds of moral claim they want to be able to make, about normative justification and the methodological process, and about the coherence of these components within their work.
... Empirical ethics is an approach adopted by scholars interested in combining evidencebased sociological research with ethical analysis. 36,37 The audio-taped interviews lasted between 1 and 2½ h. They were transcribed verbatim and sent to participants for validation and editing before being amended. ...
Context and objectiveLiving kidney donation accounts for approximately half of all kidney transplantation in many countries and is central to health policy focused on increasing organ supply. However, little examination of the economic consequences of living kidney donation has been undertaken from the perspective of donors themselves. This article documents living kidney donors’ views regarding recompense and payment for organ donation, based on their experience.ParticipantsTwenty-five living kidney donors from New Zealand participated in this study.Methods
This qualitative study, based on thematic analysis, uses semi-structured in-depth interviews to examine the experiences of living kidney donors. Themes were organized around altruism and the ‘gift’, perceptions of shared corporeality and identity, and donor support.ResultsMost participants agreed the donation process was costly in terms of time and money. Many incurred personal costs, and some experienced financial hardship. All the participants viewed financial hardship as a barrier to organ donation and favoured recompense for direct and indirect costs. Most did not support payment for organs, and none supported commercialization.Discussion and conclusionsThe findings show that framing organ donation as a ‘gift’ can stymie discussion about reciprocity, remuneration and exchange, making talk about financial recompense difficult. Financial well-being, nonetheless, has implications for the ability to care for self and others post-operatively. We conclude that the economic consequences for living kidney donors in jurisdictions where recompense for direct and indirect costs is insufficient are unfair. Review of financial assistance for live organ donors is therefore recommended.
... Naturally, the normal exemption of special or vulnerable populations (such as children, individuals in national service or incarcerated) still applies. Solomon (2005), however, notes at least 10 contributions that the social sciences could make to bioethics. These are noted as recognising the gaps between practice and ideals; assisting in evaluating personal aptitude for ethical analysis; investigating and recognising the institutional/environmental context in which ethics takes place; encouraging moral accountability; investigating cause and effect relationships and predictive values assumed in bioethics; clarifying the applicability of ethical principles in multicultural contexts; recognising the relevance of ethical principles in new contexts and to social phenomena; and the implied new moral problems, and greater elaboration of existing, identified problems. ...
span style="mso-ansi-language: EN-GB;" lang="EN-GB"> In an international research climate of increasingly demanding ethical review, based on a biomedical model, reflection on best practices in social, behavioural and economic science research is necessary. It is widely believed that these sciences cannot be held to the same practical requirements as those for biomedical research, although the principles of ethical research are surely universal. This article considers the ethical requirements, principles and guidelines directing research in the social, behavioural and economic sciences, recognised in the national and international arena. By means of a systematic review of available best practices, it is anticipated that general guidelines for social, behavioural and economic science research could be developed and offered to researchers in these fields. Specific consideration is given to the unique characteristics of social, behavioural and economic science research.
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... Descriptive and empirical data may be drawn upon in the philosophical reasoning of a situation, however, such evidence alone cannot be used to properly solve a normative problem. There are various views on the value of upholding a fact-value distinction within bioethics and a range of perspectives and positions have been adopted (see: Alveraz, 2001;Callahan, 1999;Herrera, 2008;Lopez, 2004;Solomon, 2005). Without delving too far into the long-running philosophical debate about the difference between facts and values, whether a distinction between the two should be upheld and the value of empirical research in ethical debates, this section briefly outlines the position adopted in this study. ...
The aim of this thesis is to explore the social and ethical issues surrounding the use of neurotechnologies to control sleep and enhance cognition in British society. Empirically, the project is based on a case study of the wake-promoting drug modafinil. Data analysis involved the study of a corpus of 77 UK news articles and 40 semi-structured interviews with three stakeholder groups: scientists and clinicians, shift workers and students. The analytical framework used was informed by previous work in both medical sociology and bioethics and developed using key concepts drawn from Science and Technology Studies. Conceptualising modafinil as a sociotechnical object, different discourses surrounding sleep, cognitive enhancement and pharmaceutical use were explored to assess how sociotechnical spaces for ‘therapy’ and ‘enhancement’ are being constructed and negotiated in different domains of social life.
The analysis of the ways in which modafinil use was positioned and of how various uses were negotiated in both media and stakeholder discourse shows how different groups can conceptualise the same technology in very different ways depending on who is doing the defining, how the users are imagined and the specific context of use. It was apparent that drugs contain not only technological scripts for how and by whom they are to be used, but also strong cultural scripts relating to legitimacy and acceptability of when, where, for what purpose they should be used. Importantly, it demonstrates that although norms may overlap to some degree, there is no universal set of norms defining and delimiting how modafinil should be used in contemporary society.
The adoption of an STS perspective, which takes a critical stance towards both technology and users, has shown how the adoption of a therapy-enhancement distinction devoid of context oversimplifies the debate around the use of drugs such as modafinil and does not capture the reality of stakeholder perspectives.
... Following M.Z. Solomon we could ask 'How can 'Is' help 'Ought'?' (Solomon 2005). ...
During the 1980s, empirical social sciences and normative theory seemingly converged within ethical debates. This tendency
kindled new debates about the limits and possibilities of empirical-normative collaboration. The article asks for adequate
ways of collaboration by taking a closer look at the philosophy of science of empirical social sciences as well as normative
theory development and its logical groundings. As a result, three possible modes of cooperation are characterized: first,
the empirical assessment of conditions that actually necessitate the translation of normatively derived basic principles into
practice rules; second, the empirical assessment of conditions for application of a moral norm which are formulated by bridging
principles; third, the empirical assessment of social practice which allows (a) to measure whether adopted norms actually
are implemented in practice or not and (b) to encounter new moral problems which are in need of ethical guidance. Finally,
the article defends a symbiotic position in Weaver’s and Trevino's triad of possible approaches to empirical-normative collaboration
in ethics.
... Western ethical thought: the opposition between 'facts' and 'values' " (Wolin, 2008, 11). It is not true that " is " and " ought " are now widely regarded as never permitted to touch one another; recently Solomon could cite many social scientists showing that in bioethics these two need to be connected (Solomon, 2005). Philosophers too keep the debate on this question open. ...
... In this study, we adopted an empirical ethics approach, allowing the facts gathered to inform normative considerations (the " is " contributing to the " ought " )171819. This study was part of a larger project aimed at exploring transplant physicians' views on LAD202122. ...
Although altruism is a key principle in our current organ donation and transplantation system, the meanings and implications of the term have been widely debated. Recently, a new type of living organ donation--anonymous and non-directed, also called living altruistic donation (LAD)--has brought the issue into sharper focus. Transplant physicians' views on altruism might influence their attitudes and actions toward living altruistic donors. This study aimed to explore such views among transplant physicians in France and Quebec.
A total of 27 French and 19 Quebec transplant physicians participated in individual, semi-structured interviews between October 2004 and December 2005. The majority of these participants associated altruism with gratuitousness and saw altruistic acts as multiple and varied, ranging from showing consideration to saving a person's life.
The transplant physicians' discourses on altruism were quite diverse, leading us to question the relevance of the concept in organ transplantation and the appropriateness of the term "living altruistic donation."
... Out of hundreds of citations, fewer than 10 from each group of journals were found in papers published in the other, despite frequent calls for more interdisciplinary cooperation between the social sciences and bioethics. [2][3][4][5][6][7][8] Differences between the fields may affect their conclusions about specific clinical dilemmas: ...
To survey members of the American Society for Bioethics and Humanities (ASBH; n = 327) and of the Society for Medical Decision Making (SMDM; n = 77) to elicit the similarities and differences in their reasoning about two clinical cases that involved ethical dilemmas. Cases: Case 1 was that of a patient refusing treatment that a surgeon thought would be beneficial. Case 2 dealt with end-of-life care. The argument was whether intensive treatment should be continued of an unconscious patient with multiorgan failure. Method: Four questions, with structured multiple alternatives, were asked about each case: identified core problems, needed additional information, appropriate next steps and who the decision maker should be. Observations and
Substantial similarities were noticed between the two groups in identifying the core problems, the information needed and the appropriate next steps. SMDM members gave more weight to outcomes and trade-offs and ASBH members had patient autonomy trump other considerations more strongly. In case 1, more than 60% of ASBH respondents identified the patient alone as the decision maker, whereas members of SMDM were almost evenly divided between having the patient as the solo decision maker or preferring a group of some sort as the decision maker, a significant difference (p<0.02). In case 2, both groups agreed that the question of discontinuing treatment should be discussed with the family and that the family alone should not be the decision maker.
Despite distinctively different methods of case analysis and little communication between the two professional communities, many similarities were observed in the actual decisions they reached on the two clinical dilemmas.
With its potential to contribute to the ethical governance of AI, eXplainable AI (XAI) research frequently asserts its relevance to ethical considerations. Yet, the substantiation of these claims with rigorous ethical analysis and reflection remains largely unexamined. This contribution endeavors to scrutinize the relationship between XAI and ethical considerations. By systematically reviewing research papers mentioning ethical terms in XAI frameworks and tools, we investigate the extent and depth of ethical discussions in scholarly research. We observe a limited and often superficial engagement with ethical theories, with a tendency to acknowledge the importance of ethics, yet treating it as a monolithic and not contextualized concept. Our findings suggest a pressing need for a more nuanced and comprehensive integration of ethics in XAI research and practice. To support this, we propose to critically reconsider transparency and explainability in regards to ethical considerations during XAI systems design while accounting for ethical complexity in practice. As future research directions, we point to the promotion of interdisciplinary collaborations and education, also for underrepresented ethical perspectives. Such ethical grounding can guide the design of ethically robust XAI systems, aligning technical advancements with ethical considerations.
An increasing number of Orthodox Christians are turning to methods of assisted reproduction. However, the ambivalent position of the “Basis of the Social Concept of the Russian Orthodox Church” (2000) does not give believers clear ethical guidelines as to which reproductive methods are acceptable. In addition, the one-sided interpretation of the “Basis” led to a complete rejection of in vitro fertilization (IVF). The Church's
commission “Intercouncil Presence” has developed a draft document that aims to clarify the ambiguous position of the “Basis” regarding reproductive technologies. In February 2021, the draft document, “Ethical issues related to in vitro fertilization,” was published on the Church’s official website. This paper analyzes the discussions that took place both before and after the publication. The author shows that IVF opponents do not understand the problem under discussion, using irrelevant, selective data that do not reflect the real state of medical practice to confirm their arguments. Analyzing the objections, the author shows that the death of embryos during IVF occurs due to natural causes, and therefore cannot be equated with murder. It is also argued that the level of congenital pathology in children remains at the level of a fraction of a percent and therefore cannot make IVF ethically unacceptable. Also, the article challenges concerns about the harm that IVF causes to pregnant women. Besides, the article reflects publications showing the possibility of the practical application of the published draft document.
2001 年后，西方翻译研究的社会语境发生剧烈变化，本土翻译伦理研究出现了数量的高速增长与内容的多样化，表现出迥异于 2001 年前翻译伦理研究的新特点与新趋势。国内现有针对西方翻译伦理研究的述评均未对 2001 年后的文献予以足够关注，无法为国内研究者提供全面参考。本文以西方翻译伦理研究在 2001 年后对先前研究导向的反思与突破为核心线索，围绕相关研究在新世纪的两项重要发展，即伦理主、客体范畴的扩展和反原则主义（anti-principlism），对 2001 年后西方翻译伦理研究的整体趋势进行评介。文章旨在揭示 2001 年后西方翻译伦理研究者在新语境下取得的新进展及所衍生的新问题，助力国内研究者全面掌握领域动态和参与国际翻译伦理研究的前沿对话。
Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether to obtain informed consent. Multiple empirical studies have explored patients' and the public's attitudes toward approaches to consent for pragmatic research. Questions remain, however, about how to use the resulting empirical data in resolving normative and policy debates and what kind of data warrants the most consideration. We recommend prioritizing data about what people consider acceptable with respect to consent for pragmatic research and data about people's informed, rather than initial, preferences on this subject. In addition, we advise caution regarding the weight given to majority viewpoints and identify circumstances when empirical data can be overridden. We argue that empirical data bolster normative arguments that alterations of consent should be the default in pragmatic research; waivers are appropriate only when the pragmatic research would otherwise be impracticable and has sufficiently high social value.
On the basis of the assumption that moral norms are central both to
lived morality and professional ethical reflection, the present chapter, rooted in
empirical bioethics, aims to identify empirical incursions into normative theory
by showing how empirical information from social-scientific research in particular
may influence various dimensions of the validity of moral norms. To this
end, the author first provides a definition and analysis of the structure of a
moral norm. He then establishes a number of dimensions of the validity of
moral norms that correspond to specific elements of this structure (including
philosophical or social justification and legitimacy, applicability to specific situations,
social implementation, and the effects of norms), while also discussing
how these dimensions may be influenced by empirical information. He concludes
with a critical consideration of the significance of these dimensions of
validity and the empirical influences on them for different ways of “doing ethics”.
When bioethics began to emerge as a distinct field in the 1960s and 1970s, it was a predominantly theoretical, normative endeavor. It was interdisciplinary from its very beginning, with academic disciplines such as medicine, law, philosophy, and theology presiding over “the birth of bioethics.” However, for a field concerned with very practical matters in medical research and clinical decision-making, it did take a surprisingly long time to incorporate empirical methods and findings into its discussions in a systematic way. Developing sound ways of integrating the views on bioethical issues of patients, health professionals, and the lay public into decision-making and policy was certainly not an early priority. When, however, this did start to happen increasingly (also against the background of a rise of the evidence-based medical paradigm), an intense debate ensued. True to bioethics’ nature as a discipline asking whether, why and how something should be done, for roughly two decades in the 1990s and the 2000s, it was hotly contested if “the empirical turn” in bioethics was justified, problematic, or long overdue (to name just a few contributions from an extensive debate). Among many things, protagonists in these debates examined the reasons for including empirical data on stakeholder views and preferences; they discussed the quality of these initiatives within bioethics; they touched on potential methodological conflicts between bioethics and disciplines that had long pursued empirical research, such as the social sciences; and most importantly, they inquired about the proper place and function of empirical findings within the process of normative reasoning. How could simplistic “is/ought fallacies” be avoided? Was there a danger that referring to empirical data could replace normative analysis and argument? Conversely, was policymaking without hearing the views of those affected by a particular policy intrinsically paternalistic?
Bioethics has long been accepted as an interdisciplinary field. The recent 'empirical turn' in bioethics is however, creating challenges that move beyond those of simple interdisciplinary collaboration, as researchers grapple with the methodological, empirical and meta-ethical challenges of combining the normative and the empirical, as well as navigating the difficulties that can arise from attempts to transcend traditional disciplinary boundaries. Empirical Bioethics: Practical and Theoretical Perspectives brings together contributions from leading experts in the field which speak to these challenges; providing insight into how they can be understood and suggestions for how they might be overcome. Combining discussions of meta-ethical challenges, examples of different methodologies for integrating empirical and normative research, and reflection on the challenges of conducting and publishing such work, this book will both introduce the novice to the field and challenge the expert.
While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define this scope of work for ourselves and to help shape the broader conversation about the impact of academic research .
Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact .
The paper analyzes potential interdisciplinary relations between bioethics and sociology while dealing with current ethical dilemmas. The paradigmatic and conceptual differences to the framework of ethical-social problems between bioethical and sociological academic disciplines are revealed. Traditionally ethical problems such as patient's rights in medicine, justification of biomedical research, euthanasia, cloning tend to be argued employing empirical argumentation and methodology of social research. The paper explores why the results of sociological studies (such as public opinion polls) are frequently ignored in the context of bioethics as well as medical sociology delimits the philosophical-ethical argumentation such as application of normative principles. New theoretical approaches - sociology of bioethics as well as bioethics in sociology are presented. The potential collaboration between social sciences and bioethics as well as mutual integration of different experts to interdisciplinary discussion in decisionmaking are disputed.
Ethical perspectives on the use of stimulants to enhance human cognitive performance (neuroenhancement) are polarized between conservative and liberal theories offering opposing advice on whether individuals have a right to use neuroenhancers and what the social outcomes of neuroenhancement might be. Meanwhile, empirical evidence shows modest prevalence and guarded public attitudes toward the neuroenhancement use of stimulants. In this Perspective, we argue that the dissonance between the prescriptions of ethical theories (what ought to be) and empirical evidence (what is) has impaired our understanding of neuroenhancement practices. This dissonance is a result of three common errors in research on the ethics of neuroenhancement: (1) expecting that public perspectives will conform to a prescriptive ethical framework; (2) ignoring the socio-economic infrastructures that influence individuals’ decisions on whether or not to use neuroenhancement; and (3) overlooking conflicts between fundamental ethical values namely, safety of neuroenhancement and autonomy. We argue that in order to understand neuroenhancement practices it is essential to recognize which values affect individual decisions to use or refuse to use neuroenhancement. Future research on the ethics of neuroenhancement should assess the morally significant values for stakeholders. This will fill the gap between what ought to be done and what is done with an improved understanding of what can be done within a particular context. Clarifying conflicts between competing moral values is critical in conducting research on the efficacy of substances putatively used for neuroenhancement and also on neuroenhancement practices within academic, professional and social environments.
One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice.
In this chapter, evolution of ethics and bioethics is traced to show how an abstract and individualistic paradigm was at the core of mainstream ethics prior to the advent of bioethics and applied ethics. Bioethics has transformed this individualistic paradigm because of its inherent interdisciplinarity and real-world connection. This evolution has raised questions regarding how nonabstract (e.g., experiential) and nonindividualistic (e.g., social, relational) components of ethics could be married to normative theory and ethics reflection, the latter usually not amenable to empiric research. In the first part of this chapter, pragmatism is introduced as an approach offering perspectives on the integration of social, nonindividualistic aspects of ethics, supporting the use of social science methods within ethics and neuroethics. In the second part of this chapter, using the example of disorders of consciousness, a pragmatic perspective is explored to reframe questions and help foster nonreductionistic understandings of ethical questions and ethical dilemmas. This chapter aims to generate reflections on a set of specific clinical contexts that will also stimulate a discussion on the nature of ethical approaches.
This is an account of the evolution of ideas and the confluence of support and vision that has eventuated in the founding
of the Journal of Empirical Research on Human Research Ethics (JERHRE). Many factors have contributed to the creation of this
rather atypical academic journal, including a scientific and administrative culture that finally saw the need for it, modern
electronic technology, individuals across the world who were committed to somehow finding common ground between researchers
and those charged with ethical oversight of research, a network of helpful colleagues, and a university whose administration
gave moral support to the endeavor in a time of fiscal austerity. Perhaps equally important were the decisions to make JERHRE
a nonprofit undertaking, to emphasize the implications of empirical research for specific best practices, to serve the educational
needs of those concerned with human research, and to seek to stimulate the interest of students in gaining an evidence-based
understanding of the research contexts in which they decide to work. This article explores the ‘chemistry’ that has made it
possible to develop a somewhat unorthodox journal and set of related activities.
Institutional Review Board (IRB) decisions hinge on the availability and interpretation of information. This is demonstrated by the following well-known historical example. In 2001, 24-year-old Ellen Roche died from respiratory distress and organ failure as a result of her participation in a study at Johns Hopkins Asthma and Allergy Center. The non-therapeutic physiological study, “Mechanisms of Deep Inspiration-Induced Airway Relaxation,” was designed to examine airway hyperresponsiveness in healthy individuals in order to better understand the pathophysiology of asthma. Participants inhaled hexamethonium, a chemical ganglionic blocker that was not FDA-approved for use as specified in the experimental protocol. Risks of inhaling hexamethonium, including lung damage, had been reported in the 1950s and ‘60s. An investigation conducted after Roche's death determined that the study's principal investigator had failed to adequately search the medical literature; the protocol submitted for IRB review cited articles indexed in online literature databases that went back only as far as the 1970s.
Introduction:
Growing pressures to ration intensive care unit beds and services pose novel challenges to clinicians. Whereas the question of how to allocate scarce intensive care unit resources has received much attention, the question of whether to disclose these decisions to patients and surrogates has not been explored.
Key considerations:
We explore how considerations of professionalism, dual agency, patients' and surrogates' preferences, beneficence, and healthcare efficiency and efficacy influence the propriety of disclosing rationing decisions in the intensive care unit.
Conclusions:
There are compelling conceptual reasons to support a policy of routine disclosure. Systematic disclosure of prevailing intensive care unit norms for making allocation decisions, and of at least the most consequential specific decisions, can promote transparent, professional, and effective healthcare delivery. However, many empiric questions about how best to structure and implement disclosure processes remain to be answered. Specifically, research is needed to determine how best to operationalize disclosure processes so as to maximize prospective benefits to patients and surrogates and minimize burdens on clinicians and intensive care units.
Hume's is/ought distinction has long limited the role of empirical research in ethics, saying that data about what something
is cannot yield conclusions about the way things ought to be. However, interest in empirical research in ethics has been growing
despite this countervailing principle. We attribute some of this increased interest to a conceptual breakdown of the is/ought
distinction. MacIntyre, in reviewing the history of the is/ought distinction, argues that is and ought are not strictly separate
realms but exist in a close relationship that is clarified by adopting a teleological orientation. We propose that, instead
of recovering a teleological orientation, society tends to generate its own goals via democratic methods like those described
by Rousseau or adopt agnosticism about teleology such as described by Richard Rorty. In both latter scenarios, the distinction
between is and ought is obscured, and the role for empirical research grows, but for controversial reasons. MacIntyre warns
that the is/ought distinction should remain, but reminds ethicists to make careful arguments about when and why it is legitimate
to move from is to ought.
The aim of this study was to critically examine the current guidance for conducting ethics analysis in health technology assessment (HTA) and to offer recommendations for how to improve this practice.
MEDLINE, Philosopher's Index, and Google Scholar were searched for articles and reports using the keywords "ethics" and "health technology assessment" and related terms. Bibliographies of all relevant articles were also examined for additional references. A philosophical analysis of the existing guidance was conducted.
We offer three recommendations for improving ethics analysis in HTA. First, ethical and legal issues must be clearly separated so that all policy-relevant questions that the technology raises can be considered clearly and systematically. Second, analysts must make better use of ethics theory and discuss better how particular theoretical approaches and associated analytic tools are selected to make transparent which alternative approaches were considered and why they were rejected. Third, the necessity for philosophical expertise to adequately conduct ethics analysis needs to be acknowledged.
To act on these recommendations for ethics analysis, we offer these three steps forward: acknowledge and use relevant expertise, further develop models for conducting and reporting ethics analyses, and make use of untapped resources in the literature.
The impact of biotechnology on all living things is an interdisciplinary inquiry into some of humanity’s most fundamental questions: Who are we? How do we live together? How do we relate to the biosphere, to the rest of the living world? Are the answers given to these questions shaped by various contexts: social, cultural, economic, so on? Are there universal answers to these questions? Choosing this interdisciplinary field of knowledge production as object of inquiry offers an opportunity to investigate how traditional theories and disciplines are challenged to evolve in new directions as a response to techno-scientific developments of our times. It also allows us to study patterns of knowledge production, to examine hierarchies of knowledge and expertise, as well as the possibilities of interdisciplinary/transdisciplinary practices in a multicultural context. I will argue that a framework that incorporates universal principles shall constitute one dimension of an adequate ethical theory in the context of new genetics providing that its principles are formulated in non-exclusionary terms that reflect the relational context of individual lives. As Judith Butler has formulated »the problem is not with the universality, as such, but with an operation of universality that fails to be responsive to cultural particularity and fails to undergo a reformulation of itself in response to social and cultural conditions it includes within the scope of its applicability. When a universal appropriated or when …it must be refused, the universal precept itself becomes a site of contest, a theme and an object of democratic debate« (Butler, 2006, p. 6). What both feminist and critical bioethicists emphasize in connection with universalistic claims in bioethics is the necessity of refl ectivity upon such norms and concepts. Habermas also concludes that sociological reservations offer salutary corrections to normativism, but these critiques do not condemn normative theories to failure by social complexity. According to Habermas, purely normative considerations retain their relevance as long as we accept that complex societies shape themselves in a refl exive manner through law and politics (Habermas, 2008, p. 276). The selective readings of norms that have the grammatical form of universal statements but at the semantic level are vulnerable to particularistic interpretations of their basic concepts, such as persons, human being, call for an empirical explanation (Habermas, 2008, p. 285). Taken all these into account, and noting that the issues that are at stake in the ethical debates on the applications of various biotechnologies and genetics can deeply affect the ways we perceive us as humans, our relationships with others, and with the environment it would be more than desirable that in these debates a plurality of approaches to be represented, as this is stipulated in the three UNESCO Declarations on Bioethics.
Risk assessment is an inescapable stage for the approval of a non-therapeutic research protocol involving human subjects. However, this evaluation is very difficult and many specialists believe that human subjects are insufficiently protected against ethically unacceptable experiments. It is possible that difficulties encountered during this evaluation are the result of a bad definition of the concept of "risk", a definition that ignores some fundamental characteristics of risk and which brings into question its quantifiable and predictable nature:1) the quantification of risk, 2) anticipation of risk and 3) the establishment of a level of risk beyond which an experiment becomes ethically unacceptable.
Uncertainty as to how we should articulate empirical data and normative reasoning seems to underlie most difficulties regarding the 'empirical turn' in bioethics. This article examines three different ways in which we could understand 'empirical turn'. Using real facts in normative reasoning is trivial and would not represent a 'turn'. Becoming an empirical discipline through a shift to the social and neurosciences would be a turn away from normative thinking, which we should not take. Conducting empirical research to inform normative reasoning is the usual meaning given to the term 'empirical turn'. In this sense, however, the turn is incomplete. Bioethics has imported methodological tools from empirical disciplines, but too often it has not imported the standards to which researchers in these disciplines are held. Integrating empirical and normative approaches also represents true added difficulties. Addressing these issues from the standpoint of debates on the fact-value distinction can cloud very real methodological concerns by displacing the debate to a level of abstraction where they need not be apparent. Ideally, empirical research in bioethics should meet standards for empirical and normative validity similar to those used in the source disciplines for these methods, and articulate these aspects clearly and appropriately. More modestly, criteria to ensure that none of these standards are completely left aside would improve the quality of empirical bioethics research and partly clear the air of critiques addressing its theoretical justification, when its rigour in the particularly difficult context of interdisciplinarity is what should be at stake.
Background:
The objective of this study was to determine whether an educational intervention on medical ethics offered during a surgical intensive care unit (SICU) rotation could effect meaningful change in a tertiary SICU.
Methods:
A case-based education program was presented weekly to the surgical residents during their SICU rotation. Cases for study were designed to deal with specific ethical issues common to the SICU. Cases were studied with the residents in a group facilitated by a SICU attending physician and a nursing director. The effect of the course was monitored by case review and by the length of stay (LOS) assessment for patients who died in the SICU during 1990, the base year, through 1993.
Results:
Discussions of an ethical nature occurred more regularly and earlier during these 4 years as determined by case reviews. For patients who died after being in the SICU a minimum of more than 30 days, a marked decrease occurred in the SICU LOS from 27.8 +/- 3.7 days in 1990 to 15.7 +/- 2.4 days in 1993 (p < 0.05). The number of deaths per year and the average acuity measured by the diagnosis related group score were similar during the 4 years. The LOS in the hospital for dying patients from non-SICU services remained similar during the same time frame. These changes resulted in the dying patients using 1003 SICU days in 1993, down from the 2028 days used in 1990 (p < 0.05).
Conclusions:
We conclude that through offering a clinical ethics program during the SICU portion of the residency training, residents increased knowledge and skill in addressing and integrating practical ethical issues into their surgical resident practice. In addition, patient care directly improved with an associated reduced SICU LOS and reduced cost.
This paper advances a new paradigm in clinical ethics education that not only emphasizes development of individual clinicians' skills, but also focuses on the institutional context within which health care professionals work. This approach has been applied to the goal of improving the care provided to critically and terminally ill adults. The model has been adopted by about thirty hospitals and nursing homes; additional institutions will soon join the program, entitled Decisions Near the End of Life. Here, we describe the history and rationale for this approach, its goals, pedagogical assumptions, and design.
“There's glory for you!”
“I don't know what you mean by ‘glory,’ ” Alice said.
Humpty Dumpty smiled contemptuously. “Of course, you dont—till I tell you. I meant ‘there's a nice knock-down argument.’”
“But ‘glory’ doesn't mean a ‘nice knock-down argument,” Alice objected.
“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
“The question is,” said Alice, “whether you can make words mean so many different things.”
“The question is,” said Humpty Dumpty, “which is to be master, that's all.”
When applied bioethics confronts the topic of futility, the question of who is to be master turns out to be central. Indeed, much of the literature on futility has focused on exactly this question: who gets to define the terms of the debate? Who gets to decide that treatment is “futile” and therefore allowably withheld or withdrawn?
Empirical research pertaining to cardiopulmonary resuscitation (CPR), clinician behaviors related to do-not-resuscitate (DNR) orders and substituted judgment suggests potential contributions to medical ethics. Research quantifying the likelihood of surviving CPR points to the need for further philosophical analysis of the limitations of the patient autonomy in decision making, the nature and definition of medical futility, and the relationship between futility and professional standards. Research on DNR orders has identified barriers to the goal of patient involvement in these life and death discussions. The initial data on surrogate decision making also points to the need for a reexamination of the moral basis for substituted judgment, the moral authority of proxy decision making and the second-order status of the best interests standard. These examples of empirical research suggest that an interplay between empirical research, ethical analysis and policy development may represent a new form of interdisciplinary scholarship to improve clinical medicine.
The conventional contrast between "normative" philosophical approaches and "empirical" social science perspectives on medical ethics draws too bright a distinction. One need not be a philosopher to raise normative issues or a sociologist to practice empirical research. The best work in both disciplines should recognize the different ways in which they each join normative reflection and empirical description.
The field of bioethics has been dominated by the tenets and assumptions of Western philosophical rationalistic thought. A principles and rights-based approach to discussions of moral dilemmas has sustained and reinforced a pervasive reductionism, utilitarianism, and ethnocentrism in the field. Recent explorations of casuistry and hermeneutics suggest a movement toward an expanded theoretical and conceptual framing of medical ethical problems. Increased attention to moral phenomenology and a recognition of the importance of social, cultural, and historical determinants that shape moral questioning should facilitate collaborative work between anthropologists and ethicists. In this article, I examine the philosophical orientation of U.S. bioethics and the relationship of the social sciences to the field of medical ethics. Deterrents to collaboration between anthropologists and bioethicists are explored. Finally, I review past and possible future contributions of anthropology to the field of bioethics and, more generally, to medical ethics.
Moral Teachings from Unex-pected Quarters: Lessons for
- J L Nelson
J.L. Nelson, " Moral Teachings from Unex-pected Quarters: Lessons for Bioethics from the Social Sciences and Managed Care, " Hastings Center Report 30, no. 1 (2000):
Is Medical Education Asking Too Much of Bioethics? " both in See also M The Ethics and Efficacy of Be-havior Change Research The Enormity of the Task: Project SUP-PORT and Changing Practice
- C R Bosk
- M Z Fox
- Solomon
C. Bosk, " Professional Ethicist Avail-able: Logical, Secular, Friendly, " and R. Fox, " Is Medical Education Asking Too Much of Bioethics? " both in " Bioethics and Beyond, " Daedalus 128, no. 4 (1999). See also M.Z. Solomon, " The Ethics and Efficacy of Be-havior Change Research, " Hastings Center Report 30, no. 7 (2001) and M.Z. Solomon, " The Enormity of the Task: Project SUP-PORT and Changing Practice, " Hastings Center Report Special Supplement 26, no. 6, (1996).