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Troubled Relationship?
Observations on UNESCOs Universal Declaration on
Bioethics and Human Rights
Harald Schmidt*
I. Introduction
The Universal Declaration on Bioethics and Human Rights (UDBHR) was
adopted by the United Nations Educational and Scientific Organisation
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(UNESCO) in October 2005.1 However, it has not met with universal approval, and in fact attracted considerable criticism. Commenting on the
near-final version of the UDBHR, which was substantively equivalent to
the text ultimately adopted, some felt that a decision about whether its development had been worthwhile was premature and depended on
whether it would do some good, which could not yet be assessed.2 Others
opined that the document did not represent significant progress and was
disappointingly vague and lacking in force in key areas.3 In a hostile editorial in Developing World Bioethics, the editors of the journal took the
view that in producing the Declaration UNESCO had overstepped the
boundaries of its portfolio within the UN organisation, and had made a
surprising and misguided choice in adopting an ideological framework
(human rights) that does not feature particularly prominently in professional bioethical analyses. The authors mocked the form and content of
several articles and questioned whether in the absence of an international
consensus on many of the material propositions made [in the UDBHR]
such a declaration is called for at present. They concluded that bioethics,
as we understand it, is an academic discipline and not a playground for government appointed politician-experts to muse in an inconsequential and arguably not very sophisticated manner about ethics.4 John Williams, Director of Ethics at the World Medical Association (WMA), writing in a personal capacity, described the Declaration as a major disappointment, among
other things, because it lists desirable goals without specifying how they
can be achieved [and] for the most part [it] does not even identify, much less
1
D. Benatar, The trouble with universal declarations, Developing World Bioethics 5 (2005), 220 et seq.
3
R.A. Ashcroft, Nothing to declare: UNESCO on ethics, human rights, SciDev.Net 2005 available at http://www.scidev.net/en/opinions/nothing-to-declareunesco-on-ethics-human-rights.html; see also C. Macpherson, Global bioethics:
did the universal declaration on bioethics and human rights miss the boat?, J Med
Ethics 33 (2007), 588 et seq.
4
See also Macpherson, see note 3, 588 et seq and note 49. Williams criticism is
interesting in light of the WMAs practice of engaging with stakeholders. At the time
of writing the WMA was consulting on a new version of the Declaration of Helsinki. The declaration is widely regarded as the pre-eminent guidance on medical research. However, the consultation process has been set up in a way that restricts input to the extent that comments are invited exclusively via the WMAs national organisations (or the experts they choose to consult). A previous consultation inviting
general comments over the summer of 2007 was poorly advertised, and the results
were not made publicly available. See also H. Schmidt/A. Schulz-Baldes, The 2007
Draft Declaration of Helsinki - Plus a Change...?, Hastings Center Bioethics Forum, available at http://www.bioethicsforum.org/Declaration-of-Helsinki-newdraft.asp.
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12
IBC, Sixth meeting of the IBC Drafting Group for the Elaboration of a Declaration on Universal Norms on Bioethics, SHS/EST/04/CIB-Gred-2/4 (Rev. 3) of 12-
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14 December 2004. The previous, third, outline offered several options for the title:
Declaration on Universal Norms on Bioethics or Universal Declaration on Bioethics and Humanity [Humankind/Human Beings], see IBC, Elaboration of the
Declaration on Universal Norms on Bioethics: Third Outline of a Text,
SHS/EST/04/CIB-Gred-2/4 (Rev. 2) of 27 August 2004.
16
IBC, see note 13, para. 12, see also para. 125: It is this harmonization of bioethical principles and human rights norms that constitutes a major achievement of
the declaration.
in 1945.17 The Tribunal led both to the UDHR and to the Nuremberg Code
of 1949.18 The Code was produced in response to the atrocities committed
by doctors of the Nazi regime, who forced people held in concentration
camps and prisoners of war to be involved in perverse research projects.19
The document established the principle of voluntary consent as a necessary
condition for the ethical acceptability of research involving humans. This
principle also formed the basis of the World Medical Associations Declaration of Helsinki which was first adopted in 1964.20
The ur-publication of bioethics is thus a policy document. The Nuremberg
Code may well have been motivated by deep ethical revulsion about outrageous violations of the principle of autonomy by Nazi physicians. But such
sentiment was not expressed in a series of academic papers, or in the foundation of an academic bioethics centre. Rather, it led to the establishment of
a professional code of conduct which aimed at securing certain standards of
practice. The motivation and objectives of the Nuremberg Code were therefore absolutely parallel to those of the UDHR: to set out norms that have
authority irrespective of national law.
It is clear, then, that the history of bioethics is indeed closely intertwined
with human rights, both in its origins and in subsequent policy documents
such as the Declaration of Helsinki or the Oviedo Convention, which set
out guidance in conformity with human rights norms. Equally, jurispru17
G.J. Annas/M.A. Grodin (eds.), The Nazi Doctors and the Nuremberg Code:
Human Rights in Human Experimentation, 1992.
18
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dence at national or, for example, the regional level mixes references to bioethical policy documents and human rights.21 And academic bioethicists,
while working principally on theoretical issues, have on countless occasions
given evidence and responded to consultations on policy proposals that included some references to human rights. Of course, historical precedent and
practice alone do not necessarily justify by themselves a continuation of
this trend in the UDBHR. I will return below to the issue of justification
for the approach taken there. For now I conclude that the reference to human rights in the UDBHR is far from surprising, and was in fact to be expected by anyone vaguely familiar with the history of bioethics and the UN
approach.22
21
See, for example European Court of Human Rights, Glass v United Kingdom,
Application No.61827/00 of 9 March 2004, FLR 1 (2004), 1019; European Court of
Human Rights, Vo v France, Application No.53924/00 of 8 July 2004, EHRR 10
(2005), 71.
22
See also Andorno, see note 8, 153: the objection that the bioethical discourse is alien to a human rights approach is simply contrary to the facts: many, if
not most, international policy documents relating to bioethics issued during the past
two decades are framed on a rights-based approach and attach utmost importance to
the notion of human dignity. A paradigmatic example in this respect is the Council
of Europes Convention on Human Rights and Biomedicine (Oviedo Convention).
Nevertheless, this is not an exclusive feature of Western instruments. Indeed, [according to the University of Minnesota Human Rights Library] about 200 worldwide declarations, guidelines, recommendations, opinions and codes relating to bioethics adopted by very different institutions could be cited in support of this assertion.
posed to be.23 In this sense, IBCs explanation quoted above is not only
confusing and illuminating, but it is also incomplete. For although the authors note two separate streams, they do not explain in exactly what way
these streams relate to each other, or what their distinct features are. While
the first stream is described as being centered around the activity of reflection, a similar characterization of the actual activity of the second stream,
which we know only as having drawn upon the developing international
human rights law, is lacking. It therefore remains unclear in what sense the
two streams are said to differ. Is one supposed to have a more theoretical,
and the other a more practical, angle? Alternatively, should one be taken to
approach matters from an ethical, and the other from a legal, perspective?
Should the two streams be seen as independent equals? Or is the relationship such that there is a hierarchy between them, with (mere) reflection being inferior to a somehow superior human rights approach which might
even threaten to subsume bioethics?24
In what follows I will assume that it is plausible to view the general relationship between bioethics and human rights as a complementary one. On
this view, academic bioethics - in the various disciplines that contribute to
this field, which is in itself an inter-disciplinary one - legitimately addresses
many of the same questions as the human rights branch, whether in the
context of academic research, jurisprudence, politics, the setting out of human rights policy documents or grass roots activism. I take this overlap to
be unproblematic as long as one is clear about the scope and limitations of
the respective approaches. Accordingly, while both streams have a clear and
robust theoretical element, with distinct methodologies and normative frameworks to draw on, the human rights stream is closer to the sphere of politics and jurisprudence, and thus to the actual implementation of normative
provisions, whether at a national or global level. The role of bioethics is
primarily to provide input into the process of establishing legal norms gen23
For a more detailed discussion about the general relationship between bioethics and human rights see R.A. Ashcroft, The troubled relationship between bioethics and human rights, in: M. Freeman (ed.), Law and Bioethics: Current Legal
Issues, forthcoming.
24
T.A. Faunce, Will international human rights subsume medical ethics? Intersections in the UNESCO Universal Bioethics Declaration, J Med Ethics 31 (2005),
173 et seq.
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erated at the human rights level, and to give constructive criticism on the
appropriateness of norms once they have been established.
Although I argued that the above quotation from the explanatory memorandum is incomplete in determining the general relationship between bioethics and human rights, the IBC is quite clear about the relationship between the two streams within the UDBHR. For the authors state that the
Declaration: anchors the principles firmly in human dignity, human
rights and fundamental freedoms [] It clearly aims to establish the conformity of bioethics with international human rights law. Therefore, the
principles set out in the UDBHR are not to be understood as human rights
norms themselves. Nor are they reducible to human rights. Rather, they
should be seen as bioethical norms that have strong normative support in
human rights norms; they are anchored and in conformity with them.25
It seems clear, therefore, that the concept of complementarity as a descriptor of the relationship between human rights and bioethics is applicable not
only with regard to the general relationships between the two fields, but also if we analyse the conceptualisation within the Declaration. I contend that
the wording of Articles 2 (c), 2 (d), 3, 5-7, 9-12, and 22, which comment on
the role of human rights in this way, supports this view. Here, I will not review these articles in detail, but aim to illustrate the reference to human
rights within the UDBHR, and the complementary relationship between
human rights and bioethics, with two examples.
The first concerns debates around the moral status of prenatal life. The arguments centre primarily around the extent to which a vulnerable entity
should be protected against the interests of others, an issue that, in some
sense, has been the mainstay of a sizeable proportion of the bioethics literature in recent decades, much of which has taken an anti-authoritarian stance.26 The second example focuses on a very different level: that of entitlements of whole populations. It can be argued that, in an analogy to the lin25
26
See also Recitals 3, 8 and Articles 1 (1), 1 (2), 2 (a), 2 (c), 3 (1).
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guistic turn in early 20th century philosophy (when the focus of much philosophical research shifted to analyses of the structure and role of language)
within bioethics we currently see the beginning of a population turn, in
which the emphasis in research shifts considerably from the individual to
the population level.27 Ways of responding to SARS, bird flu, or other pandemics are considered in this context, as well as priority-setting decisions in
healthcare, or public health measures. Recent work has also addressed inequities in health between different groups globally, as, increasingly, the obscenity of the 10/90 gap is recognized.28 The HIV/AIDS epidemic in much
of sub-Saharan Africa and India, and limited access to drugs more generally,
have focused debate on the responsibilities of pharmaceutical companies,
researchers and governments in developed and developing countries towards whole populations. It is instructive to review the way in which this
trend is reflected in the UDBHR and the human rights discourse more generally, in order better to understand the relationship between the two
streams of bioethics and human rights, to be clearer about the appropriate
role of the UDBHR, and, finally, to clarify the question whether the Declaration has added anything new.
The Global Forum for Health Research was established in 1998 to help correct the dramatic imbalance in expenditure on health research globally. Broadly 90
per cent of the worldwide expenditure is spent on 10 per cent of the population, and
conversely, only 10 per cent is spent on 90 per cent of the global population. See
http://www.globalforumhealth.org/Site/000__Home.php.
29
Articles 2 (c) and (d) Aims; Article 3 Human dignity and human rights;
Article 5 Autonomy and individual responsibility; Article 6 Consent; Article 7
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Persons without the capacity to consent; Article 9 Privacy and confidentiality; Article 10 Equality, justice and equity; Article 11 Non-discrimination and nonstigmatization; Article 12 Respect for cultural diversity and pluralism; Article 22
Role of States; Article 27 Limitations on the application of the principles; Article
28 Denial of acts contrary to human rights, fundamental freedoms and human
dignity.
30
31
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nominator. But doing so also enabled them to present the most robust
form. In addition, this form was compatible with a body of literature in
philosophy that was concerned with the concept of human dignity and the
specification of entitlements and obligations in relation to born, living people. The vast majority of this work was silent on the status of prenatal
forms of life, if not overtly acknowledging that it had significantly different
status.33 Along similar lines, when the drafters of the UDHR established
that human dignity and human rights can clearly and with certainty be
ascribed only to born human beings, the implication was that the same cannot be claimed automatically for prenatal human life. Nonetheless, the
wording of Article 1 can be seen as having the advantage of not necessarily
excluding such views, while making it clear that such claims are far from
obvious truths and are hence in need of special justification.34
33
For example, Kants discussion of the concepts of autonomy and human dignity is widely regarded as foundational. While some have tried to argue that his approach can be used in support of extending a normatively thick concept of human
dignity to prenatal forms of life, such proposals are, among other things, at odds
with the fact that - against the then Zeitgeist - Kant argued in the Metaphysic of
Morals in favour of infanticide of children born out of wedlock, to preserve the
sense of honour of the mother (A 204 et seq./B 234 et. seq.), see H. Schmidt, Primplantationsdiagnostik: Jenseits des Rubikons? Individual- und sozialethische Aspekte der PID/PGD, 2003, 98 et seq.
34
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The first obvious reason [for a human rights focus] is that, as biomedical activities deal with the most basic human prerogatives such as the
right to life and to physical integrity, it is perfectly sound to have recourse to the umbrella of international human rights law to ensure their
protection. Despite all its weaknesses, the existing human rights system,
with its extensive body of international standards and wide range of
mechanisms, represents a considerable achievement of our time. This is
why it would be strange that a human rights framework could not be
used to protect people from harm in the biomedical specialty. A more
practical reason for this phenomenon is that there are few mechanisms
available other than human rights to function as a global ethical foundation, a Weltethik. In other words, the human rights framework provides a more useful approach for analysing and responding to modern
public health challenges than any framework thus far available within
the biomedical tradition36
It therefore becomes clear that Willem Landman and Udo Schklenk - quoted above with the charge that the focus on human rights in the UDBHR
was surprising and misguided since the approach did not feature prominently in professional bioethical analyses37 - are easily understood as making a category mistake. The Declaration draws on a different framework
precisely because it is not a product of academic work (even though parts
are clearly informed by it). This point also becomes clear when we ask what
the alternative should be. Should UNESCO perhaps simply have adopted
Tom Beauchamps and James Childress Principles of Biomedical Ethics38 arguably one of the most influential products of academic bioethics? It is
not obvious that doing so would have been ideologically neutral and/or
would have avoided the charges brought by many critics according to
whom, as referred above, the Declaration is overly vague.
36
Andorno, see note 8, 155. The first citation included in Andornos quotation
refers to D. Thomasma, Proposing a new agenda: bioethics and international human rights, Camb Q Healthc Ethics 10 (2001), 299 et seq., the second to J. Mann,
Health and human rights. Protecting human rights is essential for promoting
health, BMJ 312 (1996), 924 et seq.
37
38
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rights, and specify in more detail their precise meaning and implications. In
doing so, they also map onto the aforementioned population turn in bioethics.
Recitals 19 and 21 and Article 1340 of the UDBHR emphasise the concepts
of solidarity and social responsibility and stress the need for international
cooperation, in particular with respect to the special needs of developing
countries, indigenous communities and vulnerable populations.41 Article 2
(f) lists as one of the aims of the UDBHR:
to promote equitable access to medical, scientific and technological developments as well as the greatest possible flow and the rapid sharing of
knowledge concerning those developments and the sharing of benefits,
with particular attention to the needs of developing countries.
Article 15 Sharing of benefits reads:
Benefits resulting from any scientific research and its applications
should be shared with society as a whole and within the international
community, in particular with developing countries. In giving effect to
this principle, benefits may take any of the following forms:
(a) special and sustainable assistance to, and acknowledgement of, the
persons and groups that have taken part in the research;
(b) access to quality health care;
(c) provision of new diagnostic and therapeutic modalities or products
stemming from research;
(d) support for health services;
(e) access to scientific and technological knowledge;
(f) capacity-building facilities for research purposes;
(g) other forms of benefit consistent with the principles set out in this
Declaration.
40
Recital 21.
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18
Article 3 of the Oviedo Convention reads: Parties, taking into account health
needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. See note 14.
19
1992.
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VI. Conclusion
Clearly, future generations will not be protected simply because obligations
towards them are set out as a desirable goal in UNESCOs UDBHR, nor
will pharmaceutical companies and individual researchers behave responsibly as a result of the wording of the relevant articles, nor will knowledge
and scientific and medical developments be shared fairly from the moment
that the Declaration has found its way into the lecture theatres, parliaments
and boardrooms around the world. While some may wish that such documents will resolve the major issues in bioethics, which, as noted above,
some of the critics appear to view as a reasonable aim, this is clearly an unrealistic expectation.
Granted, there is considerable difference in the degree of specificity between different articles of the UDBHR, with some very detailed provisions
for very discrete areas (for example Articles 6, 7, 15, 19 and 21) and some
rather broad-brush wordings for areas that in fact give rise to a very wide
range of issues (such as paragraphs 10, 16 and 17). In particular, responsibilities towards the environment and animals have received rather scant attention.
Nonetheless, as the discussion has shown, the UDBHR has also established
a number of highly important new provisions. Their inclusion in the Declaration will not by itself bring about their realisation. But it has made it harder to ignore them. For they have been placed clearly on the political map,
and it is in this sense that Henk ten Have, Director of UNESCOs Division
of Science and Technology, argues that the Declaration has pave[d] the
way for a new agenda of bioethics at the international level.47 Equally,
bringing together under one umbrella the remaining provisions of the Declaration (that, to some extent, can also be found in comparable documents
which generally deal with more narrow areas of bioethics) has underlined
47
21
Broadly translatable as: Every definition in law is perilous, see note 8, 210 et
seq.
49
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experts in Spring 2005 might have been useful to provide further scrutiny, quality
control and transparency, and would have been a way of increasing buy-in by the
wide range of stakeholders. However, it is also clear that the appropriateness of such
arrangements needs to be evaluated in the context of UNESCOs general procedural
standards, and the time that can reasonably be allocated to the production of such
high level documents. The 22 months UNESCO spent on the UDBHR could be
seen as rather short, given the breadth of the scope of the document. However, note
that the UDHR was completed in 24 months, and that it is not entirely clear what
timeframe would be sufficient to satisfy all stakeholders that they have had a fair
chance to provide comment. It is likely that there would always be dissatisfaction in
some quarters that the ultimate text was agreed by government experts, who do not
always include people with a track record in academic bioethics since it is up to
member states to decide the composition of their delegations. Such constraints aside
it seems however clear that the process of producing the UDBHR would be easier
to defend had a second stage of consultation on a more advanced, near final draft
been scheduled. A slightly expanded timeframe might also have allowed for more
detailed consideration of issues in relation to the environment and the treatment of
animals, both of which are addressed in a somewhat abbreviated manner in the final
UDBHR.