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What is the scope for the interpretation of dignity in research involving human subjects?

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Abstract

Drawing on Lennart Nordenfelt's distinction between the four distinct senses of dignity, I elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that different interpretations of the personal senses of dignity may be acceptable in human subject research, but that inherent dignity (Menschenwürde) is not open to interpretation in the same way. In order to map out the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity in Canada's research ethics guidelines. These guidelines are unique because they consider dignity to be a foundational concept and the protection of the dignity of research subjects is regarded as a measure that prevents "the impoverishment of humanity as a whole". While the conception of humanity invoked here is incomplete, Canada's research ethics guidelines nevertheless represent a more European approach to biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the untenable connotations of speciesism.
Scientific Contribution
What is the scope for the interpretation of dignity in research involving human
subjects?
Lawrence Burns
KingÕs University College at the University of Western Ontario, 266 Epworth Ave., London, ON, Canada N6A 2M3 (Phone:
+1-519-433-3491; E-mail: lburns9@uwo.ca)
Abstract. Drawing on Lennart NordenfeltÕs distinction between the four distinct senses of dignity, I
elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that
different interpretations of the personal senses of dignity may be acceptable in human subject research, but
that inherent dignity (Menschenwu
¨rde) is not open to interpretation in the same way. In order to map out
the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity
in CanadaÕs research ethics guidelines. These guidelines are unique because they consider dignity to be a
foundational concept and the protection of the dignity of research subjects is regarded as a measure that
prevents ‘‘the impoverishment of humanity as a whole’’. While the conception of humanity invoked here is
incomplete, CanadaÕs research ethics guidelines nevertheless represent a more European approach to
biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research
involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the
untenable connotations of speciesism.
Key words: dignity, human subjects research, humanity, interpretation, moral community, Nordenfelt,
policy
There is much debate about the relevance of the
notion of dignity in biomedical policy. While it has
been viewed as a moral absolute or first principle and
an imprimatur of moral respectability by some
(Kass, 1998; Pellegrino, 2005), others regard it as a
useless and politically divisive concept (Caulfield
and Brownsword 2006; Macklin, 2003). In this
paper, I elucidate the meaning of dignity and show
why it is an important foundational concept for
regulating research on human subjects. In particu-
lar, I show that dignity is a complex concept that can
be legitimately interpreted in different ways, up to a
point. To illustrate the legitimate scope for the
interpretation of dignity, I build upon Lennart
NordenfeltÕs distinction between Menschenwu
¨rde
(which I translate as inherent dignity)
1
and the three
kinds of personal dignity (dignity of merit, dignity of
moral stature, and dignity of identity). I then show
how this nuanced concept of dignity is supported in
a unique fashion by CanadaÕs research ethics guide-
lines, which are contained in the Tri-Council policy
Statement: Ethical Conduct for Research Involving
Humans (1998) (hereafter TCPS).
In addition to its unprecedented commitment to
protecting the dignity of research subjects, there
are three claims regarding dignity that we find in
CanadaÕs research ethics guidelines that make it
exemplary: (1) the obligation to respect inherent
dignity is a moral absolute that is not open to
interpretation (i.e., one can never treat others
merely as a means to an end); (2) personal dignity
is open to interpretation by individuals and com-
munities; and (3) all of humanity can be impover-
ished by research that shows disrespect for dignity.
The wide scope of this last claim expresses what is
most controversial about dignity as it is currently
used in biomedical policy. Nonetheless, my com-
mentary elucidates how all of these three claims
hang together and delimit the meaning of dignity.
Moreover, they show why we are obligated to
promote and protect all senses of dignity.
Furthermore, given the relevance of Norden-
feltÕs interpretation of dignity to CanadaÕs research
ethics policy, we see the extent to which Canada
shares a European sensibility on biomedical mat-
ters. Specifically, the notion of dignity employed in
Med Health Care and Philos (2008) 11:191–208 Springer 2007
DOI 10.1007/s11019-007-9107-x
CanadaÕs research ethics guidelines avoids the
temptation of reducing biomedical ethics to the
legalistic, rights-based paradigm prevalent in
the US and complements other foundational
ethical principles such as autonomy, personal
integrity and vulnerability. While Rendtorff
reports that these principles constitute the prevail-
ing biomedical guideposts in Europe that are
ranked differently in different jurisdictions (2002,
p. 236), this paper concludes by showing that
dignity should be given more prominence across
every jurisdiction to the extent that it reflects the
gravity of past abuses of research subjects, moti-
vates compliance, and complements the essential
dimensions of these other principles.
In order to elucidate the meaning and value of
dignity and identify the scope it affords for
interpretation, I develop a general philosophical
account of dignity that differentiates between the
inherent and personal senses of dignity. I then
present a schematic functional account of inherent
dignity that avoids attributing dignity to human
subjects solely on the basis of their genetic identity.
On this point, my reconstruction of dignity is
distinct from that of Nordenfelt and from most
biomedical policies, but it is necessary to expand
the grounds for dignity in this way in order to
recognize that non-humans may legitimately be
regarded as having dignity too. After drawing the
basic conceptual distinctions, I interpret CanadaÕs
policy on research ethics involving human subjects
in light of the philosophical account, paying special
attention to how the procedural aspect of the
policy and the provision of examples allow some
room for interpretation while preserving the core
commitment to respecting dignity.
An overview of policies governing research on human
subjects
Before discussing the meaning of dignity and the
legitimate scope for interpreting the notion, I will
present a brief comparison of some international
research ethics policies. Doing so will help us to see
why the duty to protect inherent dignity is a moral
absolute and to appreciate the originality and value
of CanadaÕs policy. In this regard, the idea that
there could be different senses of dignity does not
contradict the fact that the protection of a core
sense of dignity should be regarded as an absolute
imperative.
CanadaÕs research ethics guidelines are part of a
tradition of research ethics policies that began post-
World War II. The Nuremberg Code, consisting of
ten ‘‘Directives for Human Experimentation’’, was
developed in 1949 by the International Military
Tribunal as a result of their investigation of war
crimes committed by Nazi physicians. The primary
directive of the Nuremberg Code was to secure the
consent of the research subject. Other directives
concerned the prevention of harm to the subject, the
pursuit of social goods, and the use of proper
research methods (e.g., using animal models first
and adhering to strict scientific standards of valid-
ity). There is no mention of dignity in the Nuremberg
Code
2
; however, the development of these directives
for research ethics was predicated on the outrage
generated by the magnitude of the disregard for the
dignity of the victims, i.e., their special moral status.
Dignity concerns were preeminent in the crea-
tion of the first official policy on research ethics
because the Nuremberg Code was a principled
response to the unprecedented use of modern
medicine and science to brutalize other human
subjects, most notably in Nazi concentration
camps. In Joseph MengeleÕs experiments at the
Auschwitz-Birkenau concentration camp, for
example, research subjects (many of whom were
twin children) were infected with tuberculosis and
killed in the course of experiments designed to test
the genetic basis of resistance (Mu
¨ller-Hill, 2001).
Other experiments designed to test the limits of
human endurance and to justify Nazi hypotheses
regarding genetics were also performed. Such
abuse of human subjects was unprecedented; not
because of the sheer number of victims, but
because of who the victimizers were and the
context in which the killings took place. That is
to say, the perpetrators were not soldiers acting on
battle-field priorities and targeting military com-
batants; instead, they were physician-researchers
serving scientific and medical ends according to
carefully constructed research protocols that
showed utter disregard for the wishes of the
research subjects and for the value of their lives.
Reflecting on the justifications for these experi-
ments, William Seidelman writes, ‘‘German med-
ical science made it professionally acceptable to
define and describe human beings as Ôsubhuman,Õ
Ôlife without value,ÕÔuseless eaters,ÕÔuseless life,Õ
Ôballast.ÕNot being considered human, the victims
were stripped of any pretense of protection and
dignity. As helpless victims, they were available to
the academic enterprise for exploitation through
inhuman research’’ (2000, p. 326). The belief that
Jews and other victims of Nazi experiments were
not human and had no inherent dignity allowed
doctors to harm and murder them under the
auspices of medical research. They were treated
LAWRENCE BURNS
192
merely as resources or unwilling instruments that
could be exploited and disposed of when no longer
useful in pursuit of ends that were of no direct
benefit to them. Here we see in extreme form
the dangers that follow from having no research
ethics policy at all or a very weak and permissive
policy.
In 1964, 15 years after the development of the
Nuremberg Code, the World Medical Association
adopted the Declaration of Helsinki. The Declara-
tion of Helsinki was a more comprehensive set of
research ethics guidelines. Respect for dignity was
featured as one of the preeminent fundamental
principles that the physician had an obligation to
protect. Specifically, under Section B (Basic Prin-
ciples for all Medical Research), Article 10 states
that, ‘‘It is the duty of the physician in medical
research to protect the life, health, privacy, and
dignity of the human subject’’ (WMA, 1964). This
principle explicitly invokes the concern for dignity
that implicitly motivated the development of the
Nuremberg Code.
The US guidelines for research on human
subjects are silent on the question of dignity. In
the Belmont Report (1979), which provides the
ethical framework for the legislation known as the
Common Rule (i.e., 45 CFR 46, Department of
Health and Human Services, 1982), respect for
dignity is not mentioned. Instead, the three basic
principles specifically mentioned are respect for
persons, beneficence, and justice (Part B). More-
over, the same three fundamental principles may be
found in the Council for International Organiza-
tions of Medical SciencesÕInternational Ethical
Guidelines for Biomedical Research Involving
Human Subjects (CIOMS, 1982). Despite the
absence of a specific principle on dignity, both
the Belmont Report and the CIOMS Guidelines
view the respect owed to non-autonomous human
subjects (i.e., those who are immature or incapac-
itated) as a basic element of the respect owed to
persons. Given this expansive notion of person-
hood, something beyond respect for autonomy is
presupposed; arguably, the relevant consideration
is respect for dignity. I say more about this below
when discussing the relationship between dignity,
autonomy, and personhood.
Despite the fact that dignity is not directly
invoked in the fundamental principles of the
CIOMS Guidelines, dignity is mentioned in the
commentaries on two of the guidelines: one links
dignity to consent
3
and the other refers to the
mechanism for ethical review (Guideline 2). This
latter reference is of particular interest because it
leaves room for the interpretation of the meaning
of dignity. Specifically, the commentary on Guide-
line 2 states that, ‘‘A national or local ethical
review committee responsible for reviewing and
approving proposals for externally sponsored
research should have among its members or
consultants persons who are thoroughly familiar
with the customs and traditions of the population
or community concerned and sensitive to issues of
human dignity’’ (CIOMS, 1982). This guideline
draws our attention to the extent to which persons
from different cultures may have different notions
of dignity. As I show in more detail below, dignity
also bears different personal senses even within a
culture, without it being a relative notion on that
account.
Finally, CanadaÕsTri-Council Policy Statement:
Ethical Conduct for Research Involving Humans
(TCPS) was adopted in 1998 (with updates in 2000,
2002, and 2005). These research ethics guidelines
apply to any researcher or institution that is funded
by any of the three federal research councils (i.e.,
the Social Sciences and Humanities Research
Council, the Natural Sciences and Engineering
Research Council, and the Canadian Institutes of
Health Research). Unlike the policies covering
research on human subjects discussed in the
previous section, CanadaÕs policy places unprece-
dented importance on dignity as a cardinal prin-
ciple that should guide research on human
subjects.
4
Furthermore, it develops a substantive
interpretation of dignity as a notion that has
several senses, some of which are open to interpre-
tation. The role that dignity should play in
protecting research subjects is elucidated through
detailed commentaries on the articles of the policy
and by means of examples of actions that demon-
strate disrespect for dignity. Before exploring
CanadaÕs policy in greater detail, I will undertake
a broader conceptual analysis of the notion of
dignity, paying special attention to its various
senses and the scope they afford for interpretation.
A basic typology of dignity
In the broader context of biomedical policy, dignity
is a highly contested notion. Abortion and eutha-
nasia are the primary battlefields, but in the
research context, the dignity of embryonic human
life and the mixing of human and non-human DNA
have become key concerns. On these fronts, many
advocates for biotechnology researchers and con-
sumers argue that respect for their inherent dignity
justifies a free hand (Caulfield and Brownsword,
2006), whereas others take an opposing view and
INTERPRETATION OF DIGNITY IN RESEARCH 193
call for greater regulation on the grounds of
protecting dignity (Pellgrino, 2005). Lost in the
headlines are the personal senses of dignity that are
vitally important to the well being, health and self-
understanding of individuals and that allow differ-
ent perspectives to flourish. In a pluralistic context
of governance, such interpretability is a means for
preserving diversity of opinion while maintaining
an inclusive community.
The basic typology of dignity that I employ here
was developed by Lennart Nordenfelt. His work
synthesizes the vast literature on dignity while
drawing attention to three important but over-
looked senses of personal dignity. Given that this is
an undertheorized aspect of dignity that makes a
unique appearance in CanadaÕs research ethics
guidelines, I am especially interested in Norden-
feltÕs interpretation of personal dignity. A typology
such as this is never absolute, however. There will
be many overlapping points of interpretation
between dignity and other moral notions such as
integrity or autonomy, but this should not be a
surprise given the fallibility of our moral reasoning
and the non-ideal conditions of lived subjectivity.
Unfortunately, I cannot explore these constraints
in as much depth as they warrant. Instead, my
modest aim is to establish that dignity has several
legitimate senses that we can employ in our
research policies in order to effectively protect
human subjects. CanadaÕs guidelines on research
ethics are an example of this multi-faceted protec-
tion. Accordingly, it provides excellent grounds for
increasing the obligation to protect dignity in
research policies in other jurisdictions.
While all of the senses of dignity are interrelated
and mutually supporting, each expresses a different
kind of worth or value that may be ascribed to a
subject.
5
Notwithstanding the range of meanings, all
varieties of dignity share three features in common,
according to Nordenfelt. That is to say, in addition
to (1) being a ‘‘special dimension of value’’, dignity
(2) commands respect (which may involve the
recognition of rights or simply positive regard and
esteem) and (3) presupposes a ground or property by
which it is conferred on the subject (Nordenfelt,
2004, 70). I examine inherent dignity and the
personal senses of dignity in the next section.
The first sense of dignity is that of Mens-
chenwu
¨rde, which I translate as inherent dignity in
order to de-emphasize its connection to human
genetic identity. Inherent dignity refers to the status
of subjects as free and equal members of a moral
community. This kind of dignity reflects the
absolute value of the subject, and one either has
inherent dignity or one does not. In this regard, it
differs from the personal senses of dignity that can
be diminished or enhanced (Nordenfelt, 2004,
pp. 70–1). The various and variable personal senses
of dignity include: dignity of merit (which reflects
oneÕs social status as valued by oneself or by
others), dignity of moral stature (which reflects the
excellence or goodness of oneÕs character), and
dignity of identity (which reflects oneÕs uniqueness
as an individual and oneÕs self-esteem).
The primary virtues of this typology of dignity
lie in its rich conceptual foundation and its
empirical support. In particular, Nordenfelt has
shown how the philosophical notion of dignity is
intimately bound up with and helps to elucidate
our individual lives and experience, e.g., with
regard to improving care for the elderly or under-
standing the broader impact of illness (Nordenfelt,
2003). By and large, the first-hand, phenomeno-
logical perspective of individual subjects is invalu-
able but is often lost in the primary debates over
dignity as an objective property.
6
Accordingly, in
what follows I demonstrate how the philosophical
elucidation of dignity supports the interpretation
of dignity in the policy, is supported by empirical
research, and complements other accounts of
dignity that appreciate its relational and social
dimensions, especially as understood in a Canadian
context (Chochinov, 2002; Pullman, 2001), but also
as practiced in Europe (Rentdorff, 2002).
Inherent and personal dignity
As indicated above, there are two principal senses
of worth and two corresponding senses of dignity:
(A) inherent worth (inherent dignity) and (B) the
worth of a particular person (personal dignity). I
discuss inherent dignity first, followed by personal
dignity.
A. Inherent dignity
The concept of inherent dignity
Inherent dignity is my translation of NordenfeltÕs
Menschenwu
¨rde. It is a formal and abstract sense of
dignity that denotes the equal worth of all subjects
who meet the relevant criteria. Nordenfelt notes that
this value cannot increase or diminish: one either has
it or one does not, and it cannot be taken away from
one as long as one exists. In addition to being a
‘‘special dimension of value’’, the second feature
that all forms of dignity share is that they entitle the
bearer to respect from others (Nordenfelt, 2004,
p. 70). In this case, respect for inherent dignity
entails that certain rights must be respected, e.g., the
LAWRENCE BURNS
194
right not to be harmed, the right to life, and the right
to self-determination. These rights are generally
regarded as the foundations of moral community,
and the link between dignity and personhood in the
legal sense is very direct here. The third aspect of
dignity, namely its ground, is extremely controver-
sial. Nordenfelt notes that humans are generally
considered to possess inherent dignity by virtue of
either (a) their being created in GodÕs image or (b)
their faculties of reasoning and self-consciousness
(2004, pp. 77–8). The latter functional ground is the
least question-begging approach, but it is not widely
endorsed. I discuss the problem of the ground for
inherent dignity in more detail below.
Even though the grounds of dignity are
debated, the idea that dignity should be the ground
of basic human rights is enshrined in national and
international laws and policies (Schachter, 1983).
However, the nature and scope of those rights will
vary depending on the relevant moral, legal, and
political context (Shultziner, 2003). For example,
inherent dignity is the foundation for moral
community and is explicitly invoked as such in
exemplary fashion in the preamble to the United
NationÕsUniversal Declaration of Human Rights
(1948), in Article 1 of UNESCOÕsUniversal Dec-
laration on the Human Genome and Human Rights
(1997), in Article 1 of the Basic Law for the Federal
Republic of Germany (Ullrich, 2003), and in Kan-
tian moral and political philosophy (Gewirth,
1998; Kant, 1999; Habermas, 2003).
In order to expand our analysis of inherent
dignity, it is necessary to say more about the
unique value it denotes, its ground, and how it
differs from autonomy. As introduced above,
inherent dignity refers to the absolute value that
distinguishes a particular class of subjects and
denotes their special moral status. According to
Rendtorff, dignity denotes the bearerÕs ‘‘outstand-
ing position’’ (2002, p. 237). More specifically,
inherent dignity places one inside the moral com-
munity as a person who deserves basic respect.
There are two primary aspects to this unique
position: inherent worth and equality.
A subject who has inherent worth is valued
simply because he or she exists as a special kind of
being, not because of any instrumental value he or
she bears. In its classic Kantian form, this means
that treating the bearer of inherent dignity instru-
mentally merely as a means to an end fails to respect
the inherent (non-instrumental) worth of the person
(Kant, 1999, p. 4:434).
7
In addition, by virtue of
having inherent (non-instrumental) worth, whoever
has inherent dignity has equal standing within the
moral community (Habermas, 2003; Ha
¨yry, 2004;
Schachter, 1983, Shultziner 2003). Any discrimina-
tion between persons would therefore be unjustified
and immoral on the grounds of dignity. Again,
there is no shifting up or down the scale; inherent
dignity is absolute.
Once we recognize the distinct character of this
sense of dignity as inherent worth and equality, we
are still left with another problem: who has this
inherent dignity and why? There are two basic
grounds for attributing inherent dignity: one is
species-based while the other is functional. I
summarize both briefly.
Species-based models consider being a human
being in some biological sense or having been
created as a human being by God to be the sole
basis for dignity (Ha
¨yry, 2004). Such criteria are
not linked to actual moral competence and are
instead based on ‘‘speciesist’’ intuitions that have
no rational justification (Singer, 2003) or are based
on articles of religious faith. Typically, this very
dominant perspective collapses into the view that
all biological human life is sacred. To the extent
that NordenfeltÕs conception of Menschenwu
¨rde
presupposes a species based-view in the strict
ontological sense (i.e., by referring to die Mens-
chen/humans), it is incompatible with the view I
present here. However, if species-based concep-
tions are grounded in a pragmatic consideration of
the link between human being and inherent dig-
nity, then such views are perfectly compatible with
my view. As I show in more detail below, we can
assert that most humans have dignity and that
being human is a sign of having dignity at a prima
facie level; however, the foundations of dignity
cannot be rooted in genetic identity at an ontolog-
ical level if we wish to make dignity a non-arbitrary
notion. Indeed, we cannot exclude other possible
candidates from having dignity in a definitive way.
Moreover, in Europe and North America we live in
pluralistic societies in which some do not regard
natural law or divine creation as the basis for
assigning dignity. Therefore, the more agnostic
term inherent dignity makes it less likely that we
shall revert to naive speciesism while preserving
what is essential about the moral dimensions of the
term ‘‘humanity’’, e.g., as invoked in the idea of a
crime against humanity. Moreover, in a research
context where we can create hybrid beings with the
potential to have genuinely human functioning, we
are forced to abandon human genetic identity in
the strict sense and focus on the phenotypic or
functional basis of what we consider to exemplify
human subjectivity.
According to a functional view of dignity, those
beings that possess (or are likely to possess) the
INTERPRETATION OF DIGNITY IN RESEARCH 195
relevant capacities or abilities have inherent dignity.
Several functional accounts of dignity may be
found in the philosophical literature, but most rely
on a set of criteria consisting of high-level reasoning
and decision-making abilities, self-consciousness,
sentience (i.e., the capacity to suffer), and the
capacity to communicate in varying degrees
(Gewirth, 1998, Habermas, 1990, Kant, 1999,
Nussbaum, 2006). These are non-arbitrary grounds
for dignity to the extent that they are broad
competencies required for being an agent in the
moral community and for having moral status. The
capacity to engage in moral deliberation and com-
munication, the capacity to experience states of
pleasure and pain (i.e., welfare) and the capacity to
act freely are all constitutive dimensions of moral
agency in this regard.
8
Admittedly, marginal cases will challenge the
functional account. For example, individuals with
severe mental impairment such as anencephalics
may not meet the criteria, and all infants may only
have it in a prospective or promissory sense.
Retrospective possession of that functioning in
severely demented persons should also be consid-
ered equivalent to functioning. The key is that we
need to be able to distinguish those who did or will
function in the relevant sense from those who will
not. Thus, depending on how realizable the func-
tionality will be, we should be prepared to afford
equivalent protection without claiming that our
standards should be lowered. However, some higher
primates such as bonobos may already meet the
criteria but we remain unwilling to accord them the
moral standing they deserve and are unwilling to
think of how such moral pluralism could function
(cf. Pluhar, 1995). By contrast, some robots or
artificial life forms may mimic the relevant func-
tioning without satisfying the criteria (cf. Bostrum,
2005).
As we see in the research ethics guidelines
below, there is a meaningful continuum between
subjects that are no longer functional in the
relevant sense (e.g., persons with dementia), those
who will become functional in an imminent fashion
(e.g., children), fetuses and embryos that have the
potential to become functional, gametes that have
more remote potential to become a constituent
part of a functional subject, and finally somatic
tissue such as blood that is theoretically capable of
becoming functional via somatic cell nuclear trans-
fer (i.e., cloning). However, the fact that there is a
continuum of potentiality here does not mean that
we cannot make meaningful distinctions based on
a functional conception of dignity and the degree
of potential possessed.
Furthermore, since moral reasoning is fallible,
the bar for meeting the relevant thresholds should be
set rather low in order to be maximally inclusive.
This is particularly important given that no one is
born in full possession of the relevant capacities.
Accordingly, a promissory dimension is necessarily
built into our conception of inherent dignity given
that we must nurture it (cf. Nussbaum, 2006).
Moreover, the consequences of failing to recognize
the dignity of some were illustrated in horrific
fashion in the Nazi experiments documented above.
Yet, the benefits of having inherent dignity are
certainly great and should not be doled out too
hastily (e.g., by allowing bonobos to vote).
Thus, despite disagreement over the exact set of
capacities (and their thresholds) that are required to
function in the relevant sense, it appears that a
functional account is the only one that can avoid the
charge of arbitrariness. That is to say, an argument
from functioning is the only legitimate position to
take within a pluralistic moral community predi-
cated on justification through reasons, evidence and
negotiation rather than faith or intuition alone
(Hagendijk et al., 2006; Misak, 2000). While it is
extremely difficult to avoid invoking human species
membership as a criterion for dignity (and this is
routinely done in health policy), we can and should
regard human species membership as a pragmatic
benchmark for dignity assignments that requires
further justification and which cannot exclude other
actual or possible beings.
Finally, in defending a functional view of the
basis for assigning dignity, it has been pointed out
that dignity seems to resemble autonomy to such a
degree that it can be collapsed into the latter.
9
While
there is a great deal of overlap in the capacities,
dignity cannot be eliminated or explained away as a
species of autonomy. This is due to differences in the
scope and meaning of the terms. As the very
schematic presentation of the inherent and personal
sense of dignity presented above has shown, dignity
is a distinct and irreducible moral concept that refers
to the worth or value of a subject. By contrast,
autonomy refers to a power or an ability of the
subject, namely the ability to make informed and
voluntary choices (or the act of making such a
choice).
10
Similarly, dignity cannot be reduced to
welfare: the welfare of the subject refers to a state of
being, which is different yet again from the worth of
that subject. These notions may overlap in signifi-
cant ways, but they are distinct and irreducible. That
is to say, the worth of a subject may be revealed by
assuming a particular interpretive standpoint on a
set abilities or an affective state without being
reducible to either of those.
LAWRENCE BURNS
196
The autonomy that is typically attributed to
persons (Beauchamp and Childress, 2001) is too
narrowly defined as executive decision-making
power. Inherent dignity depends on a broader range
of capacities for self-consciousness, sentience,
communication, and intellect, capacities that are
constitutive of the kind of communicative
competence that underlies moral agency along
Habermasian lines (Habermas, 1990). Thus, unlike
autonomy, which focuses exclusively on the indi-
vidual, dignity is an assessment of worth relative to
the moral community as a whole (cf. Horton, 2004).
In other words, the grounds for attributing dignity
to a being are directly related to the conditions for
membership in a moral community. This is reflected
in the tendency to view dignity through the prism of
species-flourishing (Nussbaum, 2006) or in relation
to KantÕs ‘‘kingdom of ends’’ (Kant, 1998). Auton-
omy, by contrast, could be attributed to a subject
simply on the basis of their capacity to act freely in
accordance with their preferences. Strategic action
may be autonomous and yet remain antagonistic to
the very idea of a moral community (e.g., the
community of thieves or of robots). Thus, even
though dignity and autonomy are closely linked,
dignity cannot be reduced to autonomy any more
than it can be reduced to welfare or happiness.
The scope for interpreting inherent dignity,
with reference to the TCPS
While personal dignity (see below) is a notion that
may be interpreted differently by different individ-
uals (i.e., it is subject-relative), inherent dignity is
not open to interpretation in this way. There will
be important disagreements over how inherent
dignity should be specified in specific contexts, but
it would be wrong to say that this implies that the
meaning of inherent dignity as such is subject-
relative. Rather, there is a ‘‘right answer’’ that the
different parties are all trying to get at, even though
they may disagree about what that answer is (e.g.,
whether bonobos or anencephalic infants have it).
In the case of personal dignity, by contrast, there is
no presumption of a right answer for all relevant
parties, even though there may be broad agreement
on one interpretation or another.
I should note, however, that there is an indirect
relationship between inherent and personal dignity
to the extent that violating the inherent dignity of
others (e.g., by murdering someone or enslaving
them) is very likely to diminish dignity of moral
stature, personal identity, and social status in very
significant ways. This connection helps us to see
the unity behind the various senses of dignity. As
we see in the next section, personal dignity adds the
subjective, phenomenological dimension to what
would otherwise be a strictly formal and objective
notion of inherent dignity that effectively deper-
sonalizes or anonymizes the subject, as valuable as
such a formal point of view may be.
CanadaÕs research ethics guidelines emphasize a
subject-neutral sense of dignity as inherent worth
described here. In Part C of the section entitled,
‘‘Context of an Ethics Framework’’, the following
fundamental commitment to respecting dignity is
presented: ‘‘It is unacceptable to treat persons solely
as means (mere objects or things), because doing so
fails to respect their intrinsic human dignity and thus
impoverishes all of humanity’’ (TCPS i.5; emphasis
mine). In other words, the policy states that inherent
dignity means that one cannot be treated solely as an
instrument in service of another personÕs goals (or
sacrificed for the goals of society). While there may
be conflict over the interpretation of whether one
research context does or does not violate such
dignity, there is no room for disagreement about the
basic meaning of inherent dignity provided here. In
addition, the reference to the impoverishment of ‘‘all
of humanity’’ extends the scope of dignity greatly
and is a very ambitious claim. It lends gravity to the
interpretation of inherent dignity, while at the same
time risking incoherence if humanity is understood
too narrowly as genetic human identity.
As I show in the next section, personal senses of
dignity permit greater scope for interpretation
relative to an individual or a community without
applying universally. Inherent dignity, by contrast,
must not be limited to particular communities
because it encompasses moral community in the
broadest possible sense. The UNÕsUniversal Dec-
laration of Human Rights (1948) captures this
broad notion of moral community that transcends
national and cultural differences. This has been
viewed as the aspirational sense of dignity, which is
often derided as hopelessly vague or as a mere
conversation starter (Caulfield and Brownsword,
2006). However, on the most charitable reading,
we should understand the goal of aspiration in
terms of the struggle to actualize the ideal of fully
equal and respectful treatment of all persons on a
global scale (and even beyond the globe).
11
This is
both a rhetorical claim that adds weight to the
policy as well as a literal claim about the danger
that crimes against humanity pose for all subjects,
not just those who are directly affected. At a deeper
level, this claim reflects the origins of research
ethics policy in the response to Nazi medical war
crimes. If the dignity of all humanity was not at
stake, why were the Nuremberg Code and the
Universal Declaration of Human Rights created?
INTERPRETATION OF DIGNITY IN RESEARCH 197
Slavery is another compelling reminder, should we
need one, that the victimization of a people reflects
badly on those who stand by and watch as much as
on those who perpetrate the crimes.
12
B. Personal dignity
A conceptual analysis of the three senses of personal
dignity
There is another very important general sense of
dignity, namely the worth of a particular person or
personal dignity. Personal dignity is less formal
and abstract than the notion of inherent dignity
because it focuses on the evaluation of a particular
individualÕs life as it is lived. That is to say,
personal dignity can be diminished or enhanced by
the events of oneÕs life and actions one has taken
whereas inherent dignity is something one either
has or lacks (Pullman, 2001). As studies in palli-
ative care have indicated, dignity in this sense has
more to do with an individualÕs own values about
what makes their own life meaningful along these
three axes rather than simply the ability to choose
how their life should end (Chochinov, 2002).
Lennart Nordenfelt has developed an excellent
tripartite notion of personal dignity: dignity of merit
(where worth derives from social status), dignity of
moral stature (where worth derives from oneÕs
virtuous character) and dignity of personal identity
(where worth derives from self-esteem or self-worth
broadly construed) (Nordenfelt, 2003, pp. 100–1). In
this section, I shall present each briefly before
fleshing out the definitions with several examples
of how they can be interpreted in different ways.
Note that there is a great deal of overlap in these
notions. I consider this to be evidence of the unity of
the notion of dignity rather than an argument that
these are too vague. Furthermore, the overlap with
other notions such as integrity, self-respect, and
autonomy cannot be regarded as a failing; rather, it
provides evidence of the complementarity between
these fundamental notions and their importance for
our self-understanding.
The personal senses of dignity are much closer
to the root of the term. In Latin dignitas denoted
the excellence of the nobility. In this respect,
dignity of merit is an essential sense of dignity
that has a long history. The social value accorded
on the basis of a high rank or a special position
within society is constitutive of dignity of merit.
Typically, respect for dignity of merit involves the
recognition of rights, e.g., the right to make
legislation (in the case of high-ranking politicians)
or the right to enjoy other privileges (Nordenfelt,
2004, p. 72). This sense of dignity is highly variable
given the different criteria by which society ranks
persons (e.g., wealth, genealogy, intelligence, or
fame), and there need not be a particular moral
dimension to that ranking (although one can see
how excessive pride in oneÕs position can lead to a
diminished moral stature). Moreover, dignity of
identity may be predicated on such dignity, with
dire consequences for the individualÕs sense of self
when that status is lost.
Dignity of moral stature denotes the value one
has by virtue of oneÕs good deeds and virtuous
judgement. It is unlike inherent dignity and dignity
of merit in that no rights follow from its posses-
sion. Rather, if one has a good character or
behaves in a moral fashion, one is entitled to enjoy
the high regard of others (Nordenfelt, 2004, p. 73).
Often dignity of moral stature is the basis of self-
respect, and it may play a large role in securing
better social status or maintaining a strong dignity
of identity. However, this sense of dignity is highly
variable too, depending on how one conducts
oneself throughout oneÕs life. Assessments of oneÕs
own moral stature are not the sole ground for this
sense of dignity. OthersÕperspectives will carry
great weight, although unlike social merit, moral
stature is not (or should not be) a matter of trends
and public opinion. There is a truth of the matter,
in other words, that makes moral stature more
objective. This is true even if moral judgement
presupposes intersubjective judgement rather than
an objective table of values (Habermas, 1990;
Edgar, 2004).
The last sense of dignity is dignity of identity.
Nordenfelt defines dignity of identity as the ‘‘dig-
nity that we attach to ourselves as integrated and
autonomous persons, persons with a history and
persons with a future with all our relationships to
other human beings’’ (2004, p. 75). This is an
innovative notion that is admittedly very broad.
Nonetheless, it captures another essential sense of
personal dignity, namely the unique value we
accord to individual persons because of who they
are (i.e., this person) rather than what they are (i.e.,
aperson). The latter object sense is captured by the
notion of inherent dignity, which is a more formal
and objective sense of individuality. Dignity of
identity is especially vulnerable to the impact of
aging and illness, because here the individual is
subject to profound changes that affect the core of
their identity and their relationships to others.
Humiliation and shaming by others also deeply
affect this identity inasmuch as they cripple oneÕs
image of oneself in the eyes of others.
As it is closely linked to autonomy and integ-
rity, we may be tempted to reduce dignity of
LAWRENCE BURNS
198
identity to both or either of these things. However,
more than these latter notions, dignity of identity is
overtly bound up with oneÕs perception of oneself
in the eyes of others. By contrast, integrity is more
self-regarding, as it conjures up the coherence of
oneÕs life as a whole in a narrative sense (Rendtorff,
2002, p. 237). Autonomy too is focused on oneÕs
own agency, i.e., oneÕs ability to direct the course
of oneÕs life. By contrast, dignity of identity is a
more relational notion that places greater emphasis
on the social dimension of self-hood. Finally,
Nordenfelt claims that dignity of identity can be
diminished even after death, unlike inherent dig-
nity that attaches only to living beings.
13
In many respects, these three senses of personal
dignity are less morally weighty than inherent
dignity. In particular, they do not translate into
rights such as the right to life or to self-determination
(although dignity of merit may do so in some
contexts). However, diminishing any of these senses
of dignity to a sufficient extent will certainly have a
great negative impact on the well being of the
subject. Indeed, whereas the moral status of
embryos debate occupies so much attention, there
is an immensely greater number of persons who are
affected by diminished personal dignity. This is
especially true in the case of the dignity of identity,
where the individualÕs sense of self is most vulner-
able. For example, in the context of research on
human subjects, this sense of dignity can be harmed
by research that stigmatizes the subject because of
their genetic make-up or their race. In even more
subtle ways, subjects who have lower dignity of
merit can be manipulated into participating in
research under false pretences (Burns et al., 2007).
NordenfeltÕs research has shown that dignity in these
senses has been especially evident in the experience
of the elderly (Nordenfelt, 2003), and the vast
literature on dignity and nursing reveals the extent
to which both care-givers and recipients of care feel
the more subtle, interpersonal effects of dignity
violations (Gallagher, 2004; So
¨derberg et al., 1997).
The positive side of these problematic experiences is
that we can enhance dignity as much as we can
diminish it. Thus, we have even more reason to
prioritize these neglected senses of dignity in order to
improve the care of persons and the protection of
research subjects.
The scope for interpreting personal dignity,
with reference to the TCPS
The assessment of personal dignity concerns oneÕs
worth as a particular individual. As indicated above,
there are three main kinds of personal dignity:
dignity of merit, dignity of moral stature, and
dignity of identity. Judgements regarding all three
of these basic forms of personal dignity may be
directed at oneself or at others and will vary
according to the events of oneÕs life.
14
As such,
personal dignity has a fundamental aesthetic or
subjective dimension (Pullman, 2001). That is to say,
any two individuals may differ in their views about
their own or othersÕdignity without it being the case
that either one is wrong. Often, these views will likely
be shared within particular socio-cultural contexts,
especially where social norms of merit or excellence
of character are relevant or where the traditions of a
given community are at issue. Moreover, at the limit
of objectivity, some judgements bearing on personal
dignity will involve fundamental ethical consider-
ations that are true even if misinterpreted by the
subject, e.g., when the researcher is obligated to
protect the inherent dignity of the research subject.
Failing to respect the dignity of the research subject
will diminish the moral status of the researcher even
if the researcher does not realize it because it is a
violation of a basic moral duty.
To get a better sense of the various senses of
personal dignity and how it may be legitimately
interpreted in different ways, consider the follow-
ing examples.
1. Someone addicted to drugs may become stigma-
tized and experience a loss in their social status
(i.e., their dignity of merit) if that addiction is
made public. In addition, that same addict may
experience their addiction as a vice or weakness of
will, which translates into a loss in their dignity of
moral stature and may even exacerbate the addic-
tion. However, in another culture (and perhaps
with a different drug), the addict may not lose any
social status or moral worth. Indeed, if the drug
produces shamanic insight, that person may have
increased dignity of merit and greater moral stat-
ure (e.g., their goodness is reflected in their being
given the gift of being a visionary) (Nencini,
2002).
2. The elderly and those receiving palliative care are
particularly susceptible to challenges that will ei-
ther diminish or enhance their personal dignity
(Chochinov, 2002; Nordenfelt, 2003). These chal-
lenges may be faced in idiosyncratic ways. For
example, two persons may disagree about whe-
ther being on pain medication that makes one
less alert and communicative affects oneÕs dig-
nity. For some Buddhist monks, identity, social
status and moral stature are all at issue when
presented with the option of using disorientating
pain medication. These Buddhist monks see such
INTERPRETATION OF DIGNITY IN RESEARCH 199
interventions as a barrier to their conscious
grasp of the moment of death (Coward et al.,
1998). The aesthetic or subjective aspect of this
assessment, which is supported by cultural beliefs
but affirmed by the individual presented with the
choice, leaves the scope of personal dignity open
to interpretation in a manner we can recognize
as perfectly legitimate and consonant with our
grasp of individual differences.
3. In the context of nursing, studies have shown
that oneÕs view of the dignity of others is
enhanced by and enhances the dignity one attri-
butes to oneself. For example, witnessing viola-
tions of patientÕs dignity are sources of great
moral distress because they affect the dignity of
the nurse (Gallagher, 2004; So
¨derberg et al.,
1997). In this regard, the social context for
understanding dignity has a great impact on how
othersÕjudgements about dignity affect oneÕs own
judgements. Something that may be regarded as
a dignity-conserving choice by the patient (e.g.,
the decision to hasten their death out of concern
for their personal dignity) may be regarded by
the nurse as a compromise of her dignity of
moral stature, should her assistance be required
or should her inaction be viewed as complicity.
The consequences of compromising oneÕs dignity
in such a scenario require that we be sensitive to
how personal dignity will set limits to the kinds
of behaviours that we can expect persons to par-
ticipate in, notwithstanding their professional
obligations as nurses, for example.
In the examples presented above, personal
dignity is experienced along a continuum and is
highly variable depending on differences in cultural
norms and in the beliefs of individuals. As a result,
it is expected that the meaning of personal dignity
will often be a matter of interpretation. CanadaÕs
research ethics guidelines acknowledge this legiti-
mate expectation without referring to personal
dignity as such. Specifically, the policy states that,
‘‘The cardinal principle of modern research ethics,
as discussed above, is respect for human dignity.
This principle aspires to protect the multiple and
interdependent interests of the person–from bodily
to psychological to cultural integrity’’ (TCPS, i.5).
The different senses of personal dignity are ‘‘multi-
ple and interdependent’’ in the relevant sense.
Whether they are expressions of dignity of merit, of
moral stature, or of identity, the subjectÕs interest
in protecting their dignity is codified in very
general terms that allow for subject-relative (and
culturally relative) differences in interpretation.
The requirement that subjects consent to
participate in research (TCPS, Section 2) and
the measures taken to protect the privacy of the
subject (TCPS, Section 3) (which is a notable part
of the dignity of identity but which also encom-
passes dignity of merit and moral stature) are two
features of the policy that allow subjects to opt
out of research that they perceive to be a threat
to their ‘‘bodily, psychological or cultural integ-
rity’’ during the course of the research trial itself
(the converse holds for opting in). The consent
process in particular provides an example of how
a procedural mechanism can protect dignity
without setting out a fixed content or interpreta-
tion of dignity that would apply a priori to all
subjects.
In this regard, the consent process itself may
have to be implemented somewhat differently in
different contexts. For example, the notion of
‘‘collective consent’’ has been developed in recog-
nition of the influence that Aboriginal communities
may legitimately exercise over the decision-making
process of individuals (Kaufert et al., 2004). This
authority can be regarded as legitimate given the
commitment to the deliberative process that under-
lies membership in a Aboriginal community. This
commitment is a unique feature of Aboriginal life
that is predicated on a long history and passed on
through oral tradition. Indeed, this rich identity is
the source of much pride. Moreover, the frame-
work for deliberation is entrenched in the policies
governing native reserves, where Aboriginal
communities have been given wide scope for
self-direction. In this regard, the dignity conferred
by being a member of a given culture has
consequences for moral, social and identity-based
conceptions of dignity that demand special con-
sideration by researchers. Researchers who are
unfamiliar with the political reality of reserves may
be shocked that individuals would consent to that
deferral of authority; however, the dignity of the
individual is very much supported by their mem-
bership in that tradition and is not threatened in
principle by the decisions of the elders. However,
this assumes that the process is fair and provides
recourse for appeals, which in the context of a
given situation may not be the case. Where there is
dissent on the part of an individual, there are
certainly mechanisms that can be brought to bear
in order to mediate the situation. For example,
the Canadian Charter of Rights and Freedoms and
the federal research ethics guidelines will still
apply and there are dispute mechanisms built into
these.
LAWRENCE BURNS
200
Finally, the prohibition against certain kinds of
research ensures that prospective research subjects
will not be presented with the option of partici-
pating in some kinds of research that will threaten
their personal dignity. This prohibition is based on
anticipating actions that would be disrespectful of
the dignity of the subjects involved or affected by
that research. The justification may be contentious
because it has a paternalistic dimension; i.e., it
assumes that subjects need to be protected from
their own bad choices. However, disrespect for
dignity is generally only one consideration among
others that provides the basis for excluding certain
kinds of research. In this category we find the
prohibitions against selling gametes (TCPS, Art.
9.2) and against creating human embryos specifi-
cally for research (TCPS, Art. 9.3). I discuss the
reasons why dignity considerations justify these
and other prohibitions below. For the moment, I
will only note that were one to participate in such
research, it is expected that this would result in a
diminished dignity of moral stature, given that the
subjectÕs participation in such activity would con-
stitute a character flaw.
To sum up, personal dignity is in many respects
open to interpretation by individuals; inherent
dignity, by contrast, is agent-neutral in the sense
that all must share a basic view regarding the
content of inherent dignity (i.e., freedom and
equality). Distinguishing these various kinds of
dignity helps us to see how dignity can be best
invoked in different contexts. In some cases,
preventing subjects from interpreting dignity as
they wish will constitute a harm. As the example of
the Buddhist monk shows above, we can hold
different views about our personal dignity without
believing that all persons should endorse them. To
think otherwise is to ignore the complexity of our
moral experience and the importance of situated
self-understanding. Research subjects will use their
discretion to decide what does or does not violate
their sense of self-identity and integrity. Moreover,
in order to prevent wrongdoing and ensure that
research subjects will not be complicit or victim-
ized, it is necessary to prohibit certain kinds of
research. We see examples of these various mea-
sures in the guidelines on human subject research
described below.
Specific examples of disrespect for dignity
in CanadaÕs research ethics guidelines
In addition to the overriding obligation to respect
dignity summarized in Parts A (ii) and B (ii) above,
CanadaÕs research ethics guidelines present a long
list of specific applications of dignity. These
examples provide guidance for judging the permis-
sibility of proposed research activities that may be
analogous in some essential respect. The use of
examples reflects the kind of case-based, casuistic
reasoning that is especially relevant to biomedical
ethics (Toulmin and Jonsen, 1988). Not all of the
justifications provided in the accompanying com-
mentaries are as comprehensive as they should be,
but that does not mean that we cannot improve
upon them by reconstructing the argument or
drawing on other references within the policy or in
other policies. To this end, I will add my own brief
commentaries.
My aim is to show how the various senses of
dignity are implicated in the research and the scope
for interpretation allowed for each. I acknowledge
that several senses of dignity may be at play in
any given interpretation and that they may overlap
to a greater or lesser extent. Accordingly, at the
expense of a finer grained analysis, I tend to
distinguish inherent from personal senses of dig-
nity generally in what follows, leaving the more
refined analysis of the different senses of personal
dignity to another paper. In other words, it is
necessary to document the experiences and con-
cerns of individual research subjects if we wish to
take into account the full scope of personal dignity.
I begin with Article 2.1 (a) of the TCPS, which
links dignity and consent. Unless otherwise noted,
the number in the parenthetical reference refers to
the page number of the TCPS, not to the Article
(which is cited in the commentary).
The first application of the principle of respect
for dignity concerns consent: ‘‘Article 2.1(a) states
the requirement in both ethics and law: to protect
and promote human dignity. Ethical research
involving humans requires free and informed
consent’’ (TCPS, 2.1). This is a striking comment
on the foundational value of dignity in all human
research, given that Article 2.1 (a) focuses entirely
on the need to secure and maintain the consent of
research participants or to have a proxy consent
for those who are incompetent.
15
In part, the requirement to secure and maintain
consent allows one to protect oneÕs unique inter-
ests. This affords a procedural level of protection,
as discussed in Part B above. Thus, oneÕs personal
dignity may be protected by the subject him or
herself whenever faced with circumstances that
would have an affect on dignity of merit, moral
stature or identity. Consent requirements also
implement respect for the recognition of the
individualÕs inherent dignity as a moral agent
INTERPRETATION OF DIGNITY IN RESEARCH 201
who has the right to decide what they wish to do.
That is to say, the subject is likely to be their own
best advocate for preventing themselves from being
used merely to serve othersÕneeds. As we know
from historical precedent, the greatest assaults on
human dignity and welfare in the context of
research on human subjects were accompanied by
the failure to get consent (see the discussion of
Nazi research above). This failure was symptom-
atic of a general disregard for dignity because the
subjects were treated merely as means to an end
rather than as subjects who had inherent worth.
Article 2.3 (on privacy) and Section 5 (on
justice) also invoke the personal and inherent
senses of dignity, but I shall not discuss them in
detail here.
16
Instead, I will turn to Sections 9 and
10 that apply the principle of respect for dignity to
the use of human tissue. These sections focus on
the use of human reproductive material such as
ova, sperm, and embryos as well as non-reproduc-
tive tissue such as blood samples. Each article in
these sections can be read in light of the big picture
question as to whether there can be threats to
humanity as a whole (the most powerful claim
made in the TCPS). Moreover, we see how a
concern for inherent dignity motivates the regula-
tion of research involving early embryonic life,
whereas a concern for personal dignity motivates
the regulation of how parts of the body are used in
research.
By and large, the application of the principle of
respect for dignity varies depending on the kind of
tissue used in the research, the manner in which the
tissue is procured, and the research itself. The first
problem concerning dignity broached in Section 9
is the retrieval of tissue without consent: ‘‘Respect
for human dignity also means that it is unaccept-
able to obtain gametes from foetuses or individuals
unable to consent for themselves’’ (TCPS, 9.2).
This example plunges us directly into the deep
waters of the moral status of ‘‘marginal cases’’, at
least with regard to the moral status of the human
fetus. That is to say, we cannot assign autonomy to
the fetus (i.e., the right to consent) because it was
never autonomous in the relevant sense. In the case
of individuals who cannot consent, they may
resemble the case of the fetus in that they were
never autonomous or they may simply be no longer
autonomous at the present time. Either way, in the
absence of the functionality relevant to being a
moral agent within a moral community, inherent
dignity cannot be assigned directly to the fetus or
to the non-autonomous individual. In other words,
neither autonomy nor inherent dignity can be
meaningfully attributed in this case, except in terms
of potentiality or prior possession. Instead, con-
siderations pertaining to the inherent dignity of
humanity as such provide the primary basis for
excluding the collection of gametes, keeping in
mind the TCPSÕs worry about research that can
impoverish all of humanity (TCPS, i5). Here
‘‘humanity as such’’ should be read as a somewhat
rhetorical and conventional way of referring to the
moral community as a whole and of acknowledg-
ing the dangers posed to the conditions for moral
agency in general.
We get a clearer sense of how an act performed
on a fetus or a non-autonomous individual can be
a threat to the moral community as a whole when
we consider the case of the prohibition against
selling reproductive tissue such as ova, sperm, or
embryos (TCPS, Art. 9.2). The commentary states
that, ‘‘Inspired by the fundamental ethical princi-
ple of respect for human dignity, Article 9.2
expresses the moral prohibition against the com-
mercialization of human reproduction’’ (TCPS,
9.2). This is essentially a slippery slope argument: if
you allow reproductive tissues to be commercial-
ized, then we could create a culture in which it
would be acceptable to commercialize persons as
such. It has happened before. Indeed, slavery is the
counterpart to the Holocaust in this respect: both
are deep and egregious violations of the principle
of respect for human dignity. Can we prove that
commercializing reproductive tissue or harvesting
fetal gametes without consent will definitively lead
us down that slope that we have already gone
down? No. But we can make assessments based on
the available evidence knowing that this issue is
important enough to merit great caution and
requires that we exercise our moral imagination
(Prusak, 2005). Moreover, we can argue from the
standpoint of the moral community as such with-
out assigning inherent dignity to the gametes,
embryo, or fetus; rather, we act out of a concern
that the inherent dignity of others and of the
community as such will be endangered by com-
mercialization. The prohibition against commer-
cializing reproduction is one of the most direct
applications of the principle of respect for dignity.
We find corroboration for this application in
CanadaÕsAssisted Human Reproduction Act
(2004), which regulates the use of assisted human
reproductive technology and research involving
human reproductive materials.
17
By and large, the same justification based on a
slippery slope argument underlies the prohibition
against creating chimeras (TCPS, Art. 9.3) and the
prohibition against cloning embryos (TCPS, Art.
9.5). With regard to chimeras, the commentary
LAWRENCE BURNS
202
reads, ‘‘Combining human genetic material with
that of other species has the potential to create new
life. The creation of hybrid individuals or species
that may survive, or are intended to survive,
violates our basic norm of respect for human life
and dignity. Article 9.3 expresses this concern,
while acknowledging that other related research
may raise fewer ethical objections’’ (TCPS, 9.2). In
this commentary, we see that the potential social
and moral cost to the community as a whole is the
basis for the prohibition. Admittedly, in light of
the speculative nature of this slippery slope, it is
hard to prove that such costs will accrue; accord-
ingly, it is preferable to argue from clear-cut and
imminent violations of autonomy and harm.
Nonetheless, refusing to raise the question of
dignity risks too much, especially when we keep
in mind the origin of research ethics in the horrors
of the Holocaust. The presumption is that we need
to be extra cautious because the creation of hybrids
poses very great risks of harm. Otherwise, the
foundation for the claim is the speciesist assertion
that we do not wish to dilute the ‘‘human stock’’,
assuming we could know what that really meant.
The final reference to dignity in CanadaÕs
research ethics guidelines concerns the dignity of
human tissue: ‘‘In Canadian society, it is generally
held that human tissue itself deserves some degree
of respect, for reasons of the dignity of the person
from whom tissue is obtained’’ (TCPS, 10.1). This
final reference is noteworthy as it implies that the
dignity of the donor is the reason why the donated
tissue has dignity (somehow the tissue reflects the
dignity of the donor in the same way the moon
reflects the light of the sun). Our acts with regard
to the tissue reflect on our own dignity as moral
agents and members of a broader moral commu-
nity. Moreover, the caveat that this view is
‘‘generally held’’ (my emphasis) in Canada is
striking. If that ‘‘generally held’’ view were to
change, then this article would have to be substan-
tially revised (and perhaps removed). Notice that
this relativization of the article runs counter to the
tendency in the CanadaÕs research ethics guidelines
to view inherent dignity as having a fixed meaning
that safeguards humanity as a whole. However,
personal dignity rather than inherent dignity is
invoked here as it concerns blood and DNA
samples rather than reproductive tissues such as
gametes or early stage human life (i.e., embryos
and fetuses). That is to say, the tissues covered
under Article 10.1 do not engage inherent dignity
in the same way because they do not have the same
proximity or resemblance to moral agency as
reproductive tissues (i.e., in the causal sense of
having the power to become a live born individ-
ual). Instead, the relevant concern has to do with
our cultural beliefs about how parts of our bodies
should be treated.
18
My elucidation of CanadaÕs research ethics
guidelines has emphasized the importance of
appealing to a broader cultural and moral com-
munity in order to understand the relevance of
dignity. Moreover, I have argued that personal
dignity does not engage the moral community as
such in the same way that inherent dignity does,
although the two primary senses of dignity are
certainly interrelated and mutually supporting.
However, as conscientious as CanadaÕs research
ethics guidelines may be at explaining the relevance
of dignity, this conflation is still prevalent and
should be rectified by making a concerted effort to
clarify the functional basis of inherent dignity.
Accordingly, before turning to some final
reflections on the importance of dignity and the
challenges we will continue to face while defending
it, it is necessary to draw attention to the prob-
lematic references to ‘‘humanity’’ throughout the
Canadian research ethics guidelines. Specifically,
the need for a careful, functional elucidation of
inherent and personal dignity is underscored by a
conceptual sloppiness in Canadian and virtually all
biomedical policies that invoke the value of human
life. At best, the conflation of human identity and
dignity helps us to see that dignity concerns are
concealed under the banner of protecting what it
means to be human, broadly conceived. At worst,
it perpetuates conflict over marginal cases by
framing dignity in terms of unfounded speciesist
presuppositions. Nevertheless, the belief in the
inherent value of human species identity is deep-
seated and appears to stand guard at the gates of
moral confusion (Baylis and Robert, 2003). A
functional view of dignity that emphasizes com-
municative competence, sociality, rationality, self-
consciousness, and that is maximally inclusive
must be integrated into the biomedical policies I
have been considering in order to avoid further
confusion.
Making dignity a priority in research on human
subjects: what do we have to gain? What do
we have to lose?
Recall that CanadaÕs research ethics guidelines
expressed the worry that some research could
threaten to ‘‘impoverish all of humanity’’ and
should be restricted on that basis. Yet, as real the
danger to the foundations of moral community
INTERPRETATION OF DIGNITY IN RESEARCH 203
may be, the conflation of all of humanity with the
moral community in the sense I have been pre-
senting it here is unjustified to the extent that it
relies on species-based criteria for inherent dignity.
However, if humanity is expanded to mean all
beings who meet the criteria for dignity, where ex
hypothesi there may be species or forms of life we
do not yet know about or whose capabilities we
misjudge, then this claim preserves its powerful
force as motivation for action and as a caution
against misguided action. After all, a crime against
humanity is never regarded as a literal affront to all
human beings directly; rather, it is a value judge-
ment about the magnitude of the crime and the
need to set a harsh penalty so that others will never
doubt the immorality of the act. The fact that
disrespect for dignity is at the root of so many
egregious injustices (e.g., genocide and slavery)
makes it an especially resonant notion. It conveys
the nobility and precious fragility of our moral
interaction within a community of equals in a way
that a more formal concept such as autonomy or
even a more psychologically rich notion like
self-integrity does not. Such connotations are
even more valuable when we realize the magnitude
of the challenge we confront in the realm of
biotechnology.
One clear lesson that we should draw from
CanadaÕs research ethics policy is that distinctions in
the domain of biomedical technologies are never
clear-cut. Our moral and conceptual distinctions are
strained in the face of novel technological possibil-
ities, but we still need conceptual clarity if our moral
reasoning is to be effective. After all, inherently
valuable subjects (as well as things that subjects
highly value) are placed in jeopardy every day in
order to further the cause of research. Much of that
research seeks to battle human suffering, but the
battle for market share, profit, and prestige is also a
powerful motivation. The dangers posed by failing
to appreciate the magnitude of the activities cur-
rently underway cannot be underemphasized. Dig-
nity, with all of its senses, is a notion comprehensive
enough to symbolize the immensity and gravity of
the task that lies at the feet of policy makers and
ethicists. While it does not exhaust the field, it takes
its rightful place near the centre of that field.
While Rendtorff (2002) has documented that
four basic principles dominate biomedical policy in
Europe, he remains agnostic as to which should be
considered the most important. In part, the deci-
sion as to whether autonomy, integrity, vulnera-
bility or dignity should be given more weight
depends on the context. This is undoubtedly true.
However, unless we wish to emulate the princip-
lism of Beauchamp and Childress (2001), and with
it lose any principled way of adjudicating conflicts
between principles, we need to give more direction
for policy makers.
Based on the analysis provided in this paper and
the evidence of CanadaÕs research ethics policy, a
dignity-based moral framework provides the stron-
gest guidance for developing effective biomedical
policies. This is especially true of research involv-
ing human subjects, where the abuses of Nazi
medicine are fresh in our memories. To the
darkness of such times, we can oppose the light
of dignity, which has remarkable powers to moti-
vate compliance. In part, this motivational power
is due to the way in which dignity is routinely
invoked as the basis for opposing the instrumen-
talization of persons. The idea that subjects have
inherent value is essential to the notion of dignity.
We see this again and again in the aspirational
value of international declarations, where it has
already become a keystone. However, the other
senses of dignity provide even greater opportunities
to increase the well being and even the health of all
persons, not just research subjects. As I have
shown, the personal senses of dignity can be
enhanced or diminished. We do not always recog-
nize the impact that such diminishment has on
persons, but once we can name and identify these
aspects of personal dignity, we can monitor them
and ensure that we work to enhance them. Nursing
and palliative care are excellent examples of this
need. Thus, we have a moral obligation to promote
the various senses of personal dignity for reasons
of health but also out of respect for the essential
part that dignity in all of its senses plays in our self-
understanding as persons.
The fact that dignity has so many senses makes it
even more valuable because it complements so
many other important moral concepts. These
include autonomy, vulnerability and integrity as
well as many others. Admittedly, the senses of
dignity described here seem to be synonymous at
times with these other notions. However, the unity
of the concept of dignity gives it an advantage over
these other notions. That is to say, we are less likely
to prioritize autonomy at all costs, for example,
even where autonomy is regarded as an essential
dimension of inherent dignity. We will not do so
because other senses of dignity counterbalance the
individuality denoted by autonomy. The same is
true of integrity, which focuses on the psychological
state of the individual more than that individualÕs
relationship to others. When we apply the matrix of
dignity to a problem, we are guaranteed to think of
the problem from multiple points of view and to
LAWRENCE BURNS
204
include multiple stakeholders. The typology of
dignity presented here should therefore be regarded
as a tool that provides additional resources for the
protection of research subjects. In other words, one
should not conclude that the typology of dignity has
to be precise and exhaustive and that the conse-
quences of respecting dignity must be in every case
distinguishable from related notions such as integ-
rity and autonomy. The overlap with related
notions should thus be seen as corroboration and
as further confirmation of the importance of dignity
as a mediating and foundational notion.
As I hope to have shown, CanadaÕs research
ethics policy is unique because in addition to the
concern for voluntary participation and the pre-
vention of harm, a more global sense of well being
is introduced under the guise of a collection of
dignity concerns. This practical example provides
independent evidence of how important a nuanced
interpretation of the many senses of dignity is when
assessing the protection we can provide to research
subjects. Given the pluralistic context in which we
seek to develop governance solutions, the flexibility
and openness of dignity to interpretation, within
limits, makes it an eminently useful notion. Again,
international declarations teach us that dignity can
generate buy-in from different nations. Inasmuch
as it keeps us at the table, it makes the chances of
harmonization and consensus that much more
likely. In this regard, dignity offers the best hope
for an ethics that will protect ‘‘humanity’’ writ
large, where this central notion is construed in the
most universal of senses.
Acknowledgements
The paper was written while I was a Postdoctoral
Fellow in the Ethics of Health Research and Policy
Training Program at Dalhousie University, funded
by the Canadian Institutes of Health Research
(CIHR). Additional funding was generously pro-
vided by a Grant-in-Aid for New Researchers in
Bioethics from Assolciated Medical Services Inc.
(AMS) (2006–7). I would also like to extend perso-
nal thanks to Tim Krahn for his generous guidance
and support and to acknowledge the support of the
Novel Tech Ethics team at Dalhousie
Notes
1. I do so for two reasons; first, to make the notion less
exotic to English ears and, more importantly, to dis-
engage dignity from the notion of human dignity im-
plied by the word Mensch.
2. Although there is one reference to ‘‘humanitarian’’
considerations that should kept in mind when consid-
ering acceptable risks involved in the research. Direc-
tive 6 states, ‘‘The degree of risk to be taken should
never exceed that determined by the humanitarian
importance of the problem to be solved by the experi-
ment’’ (International Military Tribunal, 1949).
3. Guideline 4: ‘‘By informing the prospective subjects, by
repetition and explanation, by answering their ques-
tions as they arise, and by ensuring that each individ-
ual understands each procedure, investigators elicit
their informed consent and in so doing manifest
respect for their dignity and autonomy’’ (CIOMS,
1982).
4. It is therefore closer in orientation to the United
NationsÕUniversal Declaration on Human Rights and
UNESCOÕsUniversal Declaration on Human Rights
and the Human Genome. In Canada, we find a similar
orientation around dignity in the Canadian Nurses
AssociationÕsCode of Ethics for Registered Nurses.
5. Often dignity is ascribed to an action, but this reflects
the character of the subject who carries out the action
more than the action itself.
6. For example, the mysterious property ‘‘X’’ described
by Fukuyama (2002).
7. We should draw an important lesson from an equivo-
cation in Kant here; namely, dignity and autonomy
are closely related but are in fact two different propo-
sitions inasmuch as dignity necessarily refers to the
community (i.e., the ‘‘kingdom of ends’’) whereas
autonomy is a personal affirmation of the subjectÕs
membership in that community. Another way to dis-
tinguish autonomy and dignity may be found in
GewirthÕs account of the difference between agency
(which requires that you value the ends of your
action) and dignity, which requires that you value the
agent who is the ‘‘locus and source’’ of that action
(1998, p. 169).
8. The possession of these abilities means that one can
act as a moral agent in the relevant sense, although
the degree to which this holds for any given capacity
is subject to debate. Significantly, whether one is
more utilitarian, virtue-oriented or deontological in
approach may affect where one places the relevant
thresholds.
9. Cf. Macklin (2003). I am grateful to the comments of
an anonymous reviewer on this very important point.
10. See Beauchamp and Childress (2001) for a description
of autonomy as a ‘‘decision-making’’ capacity’’ that
produces judgements and actions that reflect oneÕs
own preferences (Chapter 3).
11. Carr (1991) refers to dignity in this sense (quoted in
Gallagher, 2004).
12. In a related area of Canadian policy, respect for
inherent dignity has been shown to underlie the
‘‘equality guarantee’’ of the CanadaÕsCharter of
Rights and Freedoms. Under Section 15 (1), the
Charter states that, ‘‘Every individual is equal before
and under the law and has the right to the equal
protection and equal benefit of the law without
INTERPRETATION OF DIGNITY IN RESEARCH 205
discrimination and, in particular, without discrimina-
tion based on race, national or ethnic origin, colour,
religion, sex, age or mental or physical disability’’. A
recent decision has emphasized the relationship be-
tween respect for dignity and Section 15(1). In Law v.
Canada (1999), the Supreme Court of Canada found
that a perceived dignity violation may be evidence of
a breach of equality. That is to say, the violation of
dignity is indicative of inequality when it is accompa-
nied by differential treatment in the law and when
that differential treatment is based on a prohibited
ground of discrimination (Law v. Canada, Paragraph
10). The virtue of this interpretation of dignity is that
it acknowledges that dignity is an abstract concept
that must be applied in light of circumstances that
vary from individual to individual and case by case.
13. I do not have the space to discuss this very important
notion here, but it is addressed in some detail in
Burns, 2007.
14. Self and other-regarding judgements are also related
such that oneÕs view of others affects oneÕs own dig-
nity and vice versa (Gallagher, 2004).
15. Jumping ahead to the discussion of the use of fetal
tissue, we see this link between dignity and the
requirement to secure the consent of the woman who
donates that tissue (TCPS, Art. 9.4). The womanÕs
dignity is protected by means of the consent process.
16. Privacy engages personal dignity more than inherent
dignity because it is concerned with how others may
judge oneÕs personal choice (privacy also permits the
development of stable self-identity). A concern for jus-
tice is reflected in the principle of respect for vulnera-
ble populations whose interests and dignity should be
promoted (TCPS, Art. 2.9) and the application of this
principle to Aboriginal groups in particular (TCPS,
Art. 6.2). Those who possess inherent dignity deserve
equal treatment and, in the cases just cited, extra
effort must be made to level the playing field.
17. The history of the Assisted Human Reproduction Act is
complex, going back to 1989 when the Royal Com-
mission on New Reproductive Technologies was cre-
ated. Its final report, entitled Proceed with Care, was
published in 1993, and its findings helped to steer the
deliberations that would follow. Bill C-47, the Human
Reproductive and Genetic Technologies Act died on
the order paper in 1997. This was followed by draft
legislation that would become Bill C-56, the Assisted
Human Reproduction Act. The draft legislation was
revised on the basis of a 2001 report by the House of
Commons Standing Committee on Health, entitled
Assisted Human Reproduction: Building Families
(hereafter cited as Standing Committee). Bill C-56
became Bill C-13 and then was finally given Royal As-
sent as Bill C-6, in 2004. Regulations to the AHRA
are still being drafted, but the key provisions are in
force (Health Canada, 2006). In this legislation, it is
prohibited to solicit or provide payment for gametes,
embryos or surrogacy services. While the act does in-
voke dignity in general terms, the justification for
these particular provisions is described more fully in
The Royal Commission Report on New Reproductive
Technologies. The principle of the ‘‘Non-Commerciali-
zation of Reproduction’’ is justified by the Royal
Commission as follows: ‘‘commodifying human beings
and their bodies for commercial gain is unacceptable
because this instrumentalization is injurious to human
dignity and ultimately dehumanizing’’ (Royal Commis-
sion, 55–6). Here we have a direct correspondence be-
tween the concern for dignity, the Assisted Human
Reproduction ActÕs prohibition of payment for human
reproductive tissue (i.e., embryos, sperm, or ova) (ss.
6–7) and Article 9.2 of the TCPS. Again, of all the
inferences we may make regarding the application of
the principle of respect for inherent dignity in the
Assisted Human Reproduction Act, this seems to be the
most direct. Indeed, it captures the core notion of dig-
nity as intrinsic, non-instrumental worth.
18. The suggestion that interpretations of dignity may be
relative to particular groups is taken up in CanadaÕs
stem cell policy guidelines. The Updated Guidelines for
Human Pluripotent Stem Cell Research set out the
ethical standards to which all federally funded re-
search involving the derivation and use of human plu-
ripotent stem cells must adhere. In the 2005 Update
to the CIHR Guidelines, a significant reference to dig-
nity was added to the principles section (and this
change is preserved in the 2006 update). Article 4.0
states that, ‘‘The guidelines are based on the provi-
sions of the Tri-Council Policy Statement: Ethical
Conduct for Research Involving Humans (TCPS).
Therefore, the guidelines are based on several guiding
principles, such as [] Respect individual and com-
munity notions of human dignity and physical, spiri-
tual and cultural integrity (CIHR Guidelines, Art.
4.0). This reference to different views of dignity was
not included in the original list of principles in the
2002 version of the stem cell guidelines. Nonetheless,
it was implied inasmuch as the TCPS was always con-
sidered to be the primary basis for those guidelines.
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... From the humanistic point of view, dignity is an intrinsic and objective value that is inherent in every human being (3,4), and proper nursing care has the potential to bring about further expression of human dignity (4,5). In this respect, Miller pointed out that care refers to responding to others' needs by understanding and adopting their ends as one's own and making an effort to cultivate and restore their agency (5)(6)(7). Indeed, providing dignifying nursing care requires fulfilling all dimensions of patients' physical, emotional, social, cultural and spiritual needs (8). ...
... The findings of these studies were similar to those of international research in terms of the factors contributing to preservation of patients' dignity. These factors included: ensuring patient privacy, autonomy and involvement in care, considering patients' intrapersonal features and beliefs, offering equal and fair treatment, establishing effective communication, providing adequate information and emotional support, and employing proper forms of address (7)(8)(9)(10)(11). Many international and national nursing organizations consider the preservation of patients' dignity to be the essence of nursing care (12)(13)(14), and "risk of compromising human dignity" has been listed as an important nursing diagnosis by The North American Nursing Diagnosis Association (15). ...
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Preservation of dignity is frequently emphasized as a basic patient’s right in national and international nursing codes of ethics and is indeed the essence and core of nursing care. It is therefore essential to explore the concept based on patients’ lived experiences in order to maintain and respect their dignity and consequently improve the quality of health services and patient satisfaction. The present study aimed to discover the lived experiences of Iranian patients regarding maintaining their dignity at the bedside. This qualitative study was conducted using an interpretive phenomenological approach. A total of 14 participants (9 women and 5 men) were purposefully selected, and data were collected through individual, semi-structured and deep interviews. The recorded interviews were transcribed and analyzed by the Diekelman, Allen and Tanner approach. The findings of this study revealed three main themes and related subthemes regarding the meaning of preserving patients’ dignity. The first main theme was “exigency of preserving the innate human dignity” and comprised two subthemes: “respect for the intrinsic equality of all humans” and “treating the patient as a valued person, not an object”. The second theme was “service based on love and kindness” and included two subthemes: ‘being with the patient” and “inspiring the sense of being accepted and loved”. The third main theme emerged as “dignifying and transcendental professional service” and consisted of two subthemes: “professional commitment to uphold patients’ rights” and “enlightened practice”. This study revealed that the concept of maintaining patients’ dignity is related to health providers’ duty to preserve patients’ dignity and also their moral obligation to manifest the human love that is in their own as well as their patients’ nature. In conclusion, if nurses reflect on the transcendental nature of nursing care, they will value and prize their everyday bedside nursing practice and will utilize their capacities to be more human as well.
... Personal dignity is a type of dignity which relates to a sense of worthiness, is individualistic, tied to personal goals and social circumstances, and can be taken away or enhanced by circumstances or acts from others [3][4][5]. It should be distinguished from basic dignity, which is the inherent dignity of each human being and can be regarded as a universal and inalienable moral quality [1,6]. ...
... 3 The Barthel Index assesses ability to perform activities of daily living: 0 = total dependence -20 = maximum independence. 4 A higher score on the WHO-Five Well Being Index (from 0 to 100) indicates more well-being. 5 The EQ-5D assesses health-related quality of life on 5 dimensions 'mobility, self-care, usual activities, pain/discomfort and anxiety/depression': -0.33 = severely disabled on all domains -1 = perfect health. ...
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Patients who are cared for in long-term care facilities are vulnerable to lose personal dignity. An instrument measuring factors that influence dignity can be used to better target dignity-conserving care to an individual patient, but no such instrument is yet available for the long-term care setting. The aim of this study was to create the Measurement Instrument for Dignity AMsterdam - for Long-Term Care facilities (MIDAM-LTC) and to assess its validity and intra-observer agreement. Thirteen items specific for the LTC setting were added to the earlier developed, more general MIDAM. The MIDAM-LTC consisted of 39 symptoms or experiences for which presence as well as influence on dignity were asked, and a single item score for overall personal dignity. Questionnaires containing the MIDAM-LTC were administered face-to-face at two moments (with a 1-week interval) to 95 nursing home residents residing on general medical wards of six nursing homes in the Netherlands. Constructs related to dignity (WHO Well-Being Five Index, quality of life and physical health status) were also measured. Ten residents answered the questions while thinking aloud. Content validity, construct validity and intra-observer agreement were examined. Nine of the 39 items barely exerted influence on dignity. Eight of them could be omitted from the MIDAM-LTC, because the thinking aloud method revealed sensible explanations for their small influence on dignity. Residents reported that they missed no important items. Hypotheses to support construct validity, about the strength of correlations between on the one hand personal dignity and on the other hand well-being, quality of life or physical health status, were confirmed. On average, 83% of the scores given for each item's influence on dignity were practically consistent over 1 week, and more than 80% of the residents gave consistent scores for the single item score for overall dignity. The MIDAM-LTC has good content validity, construct validity and intra-observer agreement. By omitting 8 items from the instrument, a good balance between comprehensiveness and feasibility is realised. The MIDAM-LTC allows researchers to examine the concept of dignity more closely in the LTC setting, and can assist caregivers in providing dignity-conserving care.
... Personal dignity is a type of dignity that relates to a sense of worthiness, individualistic, tied to personal goals and social circumstances, and can be taken away or enhanced by circumstances or acts from others [6]. It should be distinguished from basic dignity, which is the inherent dignity of each human being and can be regarded as a universal and inalienable moral quality [7]. ...
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Objectives This study aimed to explore the dignity and related factors among older adults in long-term care facilities. Methods Cross-sectional data were obtained from a sample of 253 Chinese older adults dwelling in long-term care facilities. Dignity among older adults was measured using the Dignity Scale, and its potential correlates were explored using multiple linear regressions. Results Results showed that the total score of the Dignity Scale is 151.95 ± 11.75. From high to low, the different factors of dignity among older adults in long-term care facilities were as follows: caring factors (4.83 ± 0.33), social factors (4.73 ± 0.41), psychological factors (4.66 ± 0.71), value factors (4.56 ± 0.53), autonomous factors (4.50 ± 0.57), and physical factors (4.38 ± 0.55). A high score of the Dignity Scale was associated with high economic status, fewer chronic diseases, less medication, better daily living ability and long-time lived in cities. Conclusion Older adults with low economic status, more chronic diseases, and poor daily living ability, taking more medications, or the previous residence in rural areas seem to be most at low-level dignity in long-term care facilities and thus require more attention than their peers.
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الحمد لله ربّ العالمين، والصّلاة والسّلام على مُحمّد وعلى آله الطيبّين، وأصحابه الغرِّ الميامين. أمَّا بعد؛ فممَّا لاشكَّ فيه، أنَّ التطوُّرَ العلمي قد خطا خطواتٍ واسعةً جدًّا في العقود الأخيرة؛ بل إنَّ التطوُّرَ الذي وصلت إليه البشريَّة خلال السَّنوات الأخيرة يزيد بأضعاف كثيرة عمَّا أنجزته خِلال تاريخها الطويل عبر آلاف السنين. لقد أصبح البحثُ العلمي ضرورةً قصوى في حياة الأمم والشُّعوب المعاصرة، وأصبح مقياسا لرقيِّها وازدهارها، وأمرا ضَروريًّا لاستمرارها ونَهْضتِها. ومن هنا تعمل كثيرٌ من الأمم والشعوب المتطوِّرة على إيجاد القواعد الأساسيَّة، والأدوات المناسبة، للقيام بالبحوث العلمية؛ حتَّى وصل ما تنفقه كثيرٌ من الدول في ميدان البحث العلمي إلى مليارات من الدولارات. لقد شَهدت العُقودُ الأخيرة تَقدُّما هائلا في علم الحواسيب والمعلوماتيَّة، صاحبَتْه قفزاتٌ عظيمة في تطوُّر واكتِشاف تقنيَّات هندسيَّة وميكانيكية وتحليليَّة جبَّارة، الأمر الذي أدَّى إلى بناء وصنع منشآت وآلات ذات قدرات عظيمة في تحليل العيِّنات واستنباط المعلومات وربطها. هذه الآلات كانت لا تَزال حلما حتَّى عهدٍ قريب؛ غيرَ أنَّ التَّحدِّي الأكبر تَمثَّل في كيفيَّة الحصول على مصدر المعلومات، ألا وهو تلك المواد الحيويَّة الإنسانية التي تحمل في ثناياها كمًّا لامُتناهيًا من المعلومات، من أكبر عدد ممكن من الناس، ضمن أسسٍ علمية وصحيَّة ومدروسة، في حدود زمنية مقبولة، وفي إطار أخلاقي منضبط يحفظ للناس كرامتَهم وخصوصيَّتهم. ومن هنا جاء الحلُّ من خلال إيجاد ما أصبح يُعرف لاحقا باسم البنوك الحيويَّة، والتي جمعت معا كلَّ العناصر اللازمة، من آلات جبَّارة، وتقنيَّات بحثيَّة ومعلوماتيَّة دقيقة ونوعيَّة، بالإضافة إلى أعداد هائلة من العيِّنات الإنسانية. لقد أصبحت البنوكُ الحيويّة البحثية قاعدةً أساسيّة للقيام بالبحوث الطبيّة الواسعة والمستقبليّة؛ فهي تؤمّن للباحثين مواد وعينات، ومعلومات وبيانات، ووسائل بحثية، تُشكِّل التربةَ الصالحة والبيئة الملائمة للقيام بنهضة طبّيّة وبحثية واسعة. غير أن تأسيس بنك حيويّ في بلد ما، لا يُغني عن تأسيسه في البلدان الأخرى، نظرا للتباين في الجينات بين مَواطنها، واختلاف أنواع العوامل الوبائية بينها، ولا سيّما الظُّروف البيئيَّة التي أثبتت كثيرٌ من الدراسات المعاصرة أهمِّيتَها في إحداث الأدواء وظهورها. وصولًا إلى فتح الباب إلى ما يعرف بالطِبّ الشَخْصِي. وإيمانا منها بأهمِّية البنوك الحيويَّة، ولِعِظَم الدور المنوط بها، فقد بدأت معظمُ الدول المتقدِّمة، في أوروبا وأمريكا الشَّمالية واليابان والصين، بـتأسيس بنوك حيوية بأشكال مختلفة، بَدْءًا من قواعد المعلومات الجينومية، والسجلات الطبِّية، وبنوك الأنسجة، وبنوك الخلايا الجذعية، وغيرها. وتُعدُّ البنوكُ الحيوية البحثية مشاريعَ مُكلفةً من النَّاحية الاقتصادية، نظرا للحاجة إلى تأسيس بنيةٍ بحثية دقيقة وعالية المستوى، حيث تصل التكلفةُ إلى مئات الملايين من الدولارات. وقد تعجز حتَّى بعض الدول عن تأمين الميزانية المالية اللازمة لبناء البنوك الحيوية، ممَّا يدفعها إلى التعاقد مع بعض المؤسَّسات والشركات ذات الطابع التجاري. ورغم أنَّ إنشاء البنوك الحيوية لا يهدف في المقام الأوَّل إلى تحقيق الربح المادِّي، إلا أن تأمينَ الوارِد المادِّي الذي يكفل استمرارَ البنك الحيويِّ في أداء عمله يعدُّ في حدِّ ذاته عاملا حاسما في اتِّخاذ القرار بإنشائه واستمرار عمله. وبالإضافة إلى ذلك، فإنَّ بنيةَ المجتمعات السكانية وتركيبتها تؤثِّر بشكلٍ حاسم في وضع القوانين والضوابط الناظمة للبنوك الحيوية، لاسيَّما في نشر الوعي بين الناس حولَ أهمِّية البنوك الحيوية ودورها الحاسم في إحداث نقلةٍ نوعية في التطوُّرات الطبِّية المستقبلية، وتشجيع الناس على المشاركة، لما له من تأثير أساسيّ في أداء البنك لدوره. ويُضاف إلى ذلك التأثيراتُ الاجتماعية الناجمة عن الأشكال المختلفة للبحوث المجراة في البنوك. لقد أثار التطوُّرُ العلمي الهائل، الذي ساهمت البنوك الحيويَّة في جزء كبير منه، الكثيرَ من التحدِّيات والمعضلات الأخلاقية، التي لم تكن تُعرَف من قبل؛ الأمر الذي دفعَ المفكِّرين والساسة وعلماء الدين والأخلاق إلى دراسة هذه المعضلات ومحاولة وضع الحلول لنتائجها، بل والوقاية من أيِّ أثر سلبي يمكن أن ينشأ عنها. وتدور أكثر الإشكالات الأخلاقية حولَ قضايا تتعلَّق بالموافقة المستنيرة informed consent، وتقاسُم المنافع، والملكية، وحماية البيانات والمعايير الأخلاقية للسلوك، واستعراض وتقييم البحوث الطبيَّة الحيويَّة، وحفظ وحماية العيِّنات والمواد والسجلاَّت والبيانات. وقد استشعرت بعضُ الدول العربية أهميَّةَ وجود بنوك حيوية في مؤسَّساتها البحثية، فبدأت بإنشائها. وقد كانت المملكةُ العربية السعودية السبَّاقةَ في هذا الميدان، عبر قيام مركز الملك عبد الله العالمي للأبحاث الطبيَّة، كجزء من مدينة الملك عبد العزيز الطّبيّة، بإنشاء البنك الحيوي السعودي، والذي يعدُّ قفزة نوعيّة في ميدان البحث على مستوى المملكة العربية السعودية، بل والبلاد العربية. حيث سيكون بعونه تعالى قاعدة لإجراء بحوث طبيّة متنوّعة وعديدة، تلبّي حاجات المجتمع، وتستهدف الأمراض الشائعة فيه. ويُتوقّع أن يصل عدد المشاركين إلى 200 ألف، نصفهم من المرضى. وعلى الرّغمِ من الاهتمامِ الكبيرِ الذي يُبْديه الباحثون، والمفكّرون في شتّى أنحاء العالم؛ فإنّنا نشهد فقرا شديدا في المكتبة العربية، فيما يخص الأبحاث التي تتناول موضوع البنوك الحيويّة البحثّيّة، دراسة وتحليلا. ورغْم البحث الدّقيق في العديد من المكتبات في العالم العربي، فإنّنا لم نقف على أيّ مقال أو كتاب في هذا المجال. وبدأ هذا البحثُ في بابه الأوَّل بتعريف البنوك الحيويَّة، ونشأتها، وأهمِّيتها، وفكرتها؛ ثمَّ جرى بحثُ الأسس العلميَّة التي قامت عليها البنوك الحيويَّة، وكيف أنَّ البنوك الحيويَّة أصبحت أساسا لابدَّ منه لانطلاق البحوث العلمية. وجرى بعد ذكر الأنواع المختلفة للبنوك الحيويَّة، وفقا للعيِّنات التي يجري حفظُها؛ ثمَّ انتقلَ البحثُ بعد ذلك إلى استقصاء العوامل الاقتصادية والاجتماعية التي تؤثِّر في إنشاء البنوك الحيويَّة، وعملها. وتناول الباب الثّانِي، أمثلة متنوّعة عن البنوك الحيويّة. فبدأ بذكر أمثلةٍ عن الدّراسات الوبائية الكبيرة، ثم ذكر أمثلة عن بعض البنوك الحيويّة المختلفة، من شتى المناطق، بدءًا من اليابان ومرورا بأوروبا ووصولا إلى الولايات المتّحدة الأمريكية، والبنك الحيوي السعودي؛ ثم انتقل الحديث إلى أمثلة عن بعض البنوك الحيوية الإقليمية والدّوليّة. في الباب الثّالِث، دار البحثُ حولَ الأقسام التي يتشكَّل منها البنكُ الحيوي عادة، وحولَ مهمَّة كلِّ قسم، وآليَّة عمله. كما ذُكرت أيضا الضوابط الفنِّيَّة التي ينبغي توفُّرها. وتمَّ تخصيصُ الباب الرابع لبحث الأسس والتحديات والضوابط الأخلاقية للبنوك الحيويَّة، والتي جرى بحثها بشيء من الاستفاضة، مبيّنين أبعادها وتطبيقاتها. وقدّمنا في الخاتمة مجموعة من الضَّوابط الأخلاقيّة لتأسيس البنوك الحيويَّة، وعملها. وجرى استخدامُ الكثير من الجداول والرسوم البيانية التوضيحية، والتي جرى تصميمُها لهذا الكتاب بشكلٍ خاص. ونرجو من الله تعالى، أن نكونَ قد وُفِّقت إلى الصواب فيما كتبته، وأن يأجرني خير الجزاء فيما بذلنه، وأن يعاملَني بجوده وكرمه، لا بعملي وجهدي؛ فهو أهل الكمال والكرم، وأنا من أهل التقصير والخطأ. وأسأله تعالى أن يكتب النّفع فيه للمرضى والباحثين على حدّ سواء. والحمد لله في الأولى والآخرة.
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In order to effectively “speak out” as bioarchaeologists, practitioners must be aware of their audiences, both intended and unintended and academic and public. Audience reactions to and perceptions of bioarchaeological research are shaped in large part by a long and shifting history of cultural perceptions of death and the human body. Further, legislation and public policy in regard to sites of “dark tourism” can affect the translation of research and its interpretation by visitors. This chapter offers a review of public perceptions of the body, both dead and undead, as well as an introduction to the concept of “dark tourism” and the popular media and pop culture’s influence on these perceptions in an effort to equip bioarchaeologists with an augmented awareness of their potential audiences.
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Background: Preserving dignity is an important goal of the care given in nursing homes. Although nursing home residents themselves are the preferred source of information about the factors that influence their dignity, they may not always be able to provide this. In these cases, information must be obtained from proxy informants such as family members or caregiver staff. Knowledge on comparability of proxies' and residents' answers is then important to interpret this information appropriately. Objectives: To explore the extent to which responses of different types of proxies correspond with nursing home residents' responses when they both assess the resident's personal dignity. Design: A cross-sectional survey. Settings: The general medical wards of six nursing homes in the Netherlands. Participants: Ninety-five nursing home residents, their family members, nurses and elderly care physicians. Methods: Agreement percentages were calculated between residents' and proxies' answers on the Measurement Instrument for Dignity AMsterdam-for Long Term Care facilities, an instrument consisting of 31 symptoms or experiences for which presence as well as influence on dignity were asked, and a single item score for overall personal dignity. Results: Proxies generally rated the residents' dignity more negatively on the single item score than residents did themselves. Agreement percentages between residents and the different proxies ranged between 53% and 63% for the single item score, between 68% and 72% for the presence of items and between 68% and 76% for items' influence on dignity. Agreement on items' presence and influence on dignity was highest for physicians and lowest for family. Family members tended to overestimate the presence of items in the resident's life as well as their influence on dignity. They could however best recognize when a resident's dignity was considerably violated, whereas physicians and nurses overlooked this more often. Physicians and nurses were not always aware that certain items were present--especially of care items in which they themselves were involved. Conclusion: Reports from proxy-informants cannot simply be substituted for nursing home residents' reports of personal dignity. However, if residents are not able to provide information themselves, there can still be value in proxy response on dignity if results are interpreted in light of the patterns of deviation observed in this study.
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The concept of Human Dignity has become more and more prevalent in legal, moral and philosophical discourses. However, as much as linguistic functions of the concept have become widespread, its meanings have become ambiguous and blurred. This paper seeks to map and depict the main functions and meanings that the concept of human dignity encompass, and, hence, to enable both those concerned with law and its interpretation, and moral-philosophers to discern the different linguistic-spheres and the different meanings this concept encircle. The analysis will show that the meanings of human dignity are socially constructed in accordance with particular cultural and historical contexts. There is no one "true" meaning of human dignity, but rather different levels of "thickness" and "thinness" that are culturally determined in each society. The paper advances insights regarding the use of human dignity in both the legal parlance - as a justification for human rights in legal documents; and in the moral-philosophical parlance - as compared to a worldview on the one hand, and as related to humiliation on the other.
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This paper explores the problem of universalism and particularism in contemporary ethics, and its relationship to Christian bioethics in particular. An ethic of human dignity is outlined, which, it is argued, constrains moral discourse in the broad sense – thus meeting the demands of universalism – but which is at the same time amenable to a variety of particularist interpretations – thus acknowledging the current shift toward historicism, traditionalism, and culture. The particularist interpretations that are of central concern here are those provided by historic Christianity. The eventual goal is to indicate how a Christian conception of human dignity can have universal normative relevance both as a standard against which to assess competing particularist conceptions, and as a practical guide for everyday living. A Christian conception of dignity will in turn have significant implications when addressing contemporary issues in bioethics. These are ambitious goals, and a full explication of the ideas presented will not be possible in this context. Nevertheless, there is value in getting a bird's-eye view of the landscape before one goes about scaling the mountains and exploring the valleys. The present essay is intended as a general geography of the moral terrain in which an ethic of dignity in general, and a Christian perspective on dignity in particular, can provide normative guidance.
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