Encuentros

Respect for human beings' autonomy is one further central tenet and constituting concept of human rights doctrine. As stated by Karl Klare, "the dominant understanding of the human rights project is to erect barriers between the individual and the state, so as to protect human autonomy and self-determination from being violated or crushed by governmental power.”961

Autonomy indeed features prominently in several provisions of all standards in the area of bioethics. In the UDBHR it is explicitly mentioned in Article 5 - Autonomy and individual responsibility – which holds that “the autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests.” In all other standards dealing directly with bioethics the principle of autonomy also receives a prominent place mostly through the clauses dealing with informed consent, discussed above as well as through those dealing with privacy and confidentiality. The international declaration on the Human Genome for example specifies in Article 14 that “(a) States should endeavour to protect the privacy of individuals and the confidentiality of human genetic data linked to an identifiable person, family or, where appropriate, group, in accordance with domestic law consistent with the international law of human rights. Valuing each individual's autonomy also means that (b) Human genetic data, human proteomic data and biological samples linked to an identifiable person should not be disclosed or made accessible to third parties, in particular, employers, insurance companies, educational institutions and the family.”

The principle of respect for autonomy and its common expression as or in the process of obtaining informed consent deserves some further elaboration. In the literature on bioethics autonomy is

961

M. Mutua, "Human Rights and Powerlessness: Pathologies of Choice and Substance", 56 Buffalo Law Review, 2008, 1027, citing at 1027 K. Klare, "Legal Theory and Democratic Reconstruction: Reflections of 1989", 25 University of British Columbia Law Review, 1991, 69, 97.

commonly construed to mean that patients have a right to make decisions about their medical care without their health care providers trying to influence the decision.962 _{That is, the latter should}

sufficiently educate patients, use his or her training, knowledge and experience to provide patients with facts about the diagnosis and about the prognoses without treatment and with alternative treatment but may not make decisions for patients. 963 _{In other words, to act autonomously in the}

area of bioethics and health care means that one has to have the liberty, possibility and the capacity to act and make moral choices independently and in accordance with the individual's beliefs, maxims and principles and without controlling influences that would mitigate against a free and voluntary act. 964 _{Respect involves not only refraining from interfering with others' choices, but}

sometimes entails providing them with the necessary conditions and opportunities for exercising autonomy - in that sense autonomy is often equated with informed consent. A patient's autonomy is only limited where the principle of autonomy can or does result in harm to others. The

explanatory memorandum on the previous draft of the UDBHR echoes these considerations: Respect for personal autonomy is strongly linked to and, according to certain

interpretations, derives from the notion of human dignity. It is directly derived from binding international human rights law. Individuals cannot be instrumentalised and treated merely as means to a scientific end; they should be granted the authority to make autonomous decisions in all aspects of their lives where their decisions do no harm to others. Respect for autonomy involves not just a respectful attitude but also respectful action. However, autonomy, in this interpretation, is not simply an invested right. It also has the dimension of responsibility towards others. Article 9 [of the UDBHR] reflects the right of each person to make individual decisions, whilst at the same time respecting the autonomy of others. Some experts wanted to reinforce the emphasis on responsibility by including in Article 9 reference to the duty to take such responsibility. However that formulation seemed to be too forceful and might indicate a possible erroneous

interpretation of autonomy which is not a synonym of 'freedom' or 'liberty'. Autonomy refers to the concept of acting in accordance with voluntarily accepted principles but it does not liberate the individual from taking responsibility for his or her actions. 965

In the area of human rights the absolute need to preserve and protect human beings' autonomy is usually taken to be one fundamental cornerstone of human rights philosophy and theory.966 _Yet,

while there are many differences in human rights scholars' understanding of what and how autonomy is exactly constituted, how it exactly relates to persons, moral obligations and

responsibilities and what social policies or laws it justifies or necessitates, most of these scholars, nevertheless, also seem to agree on three accounts. For one, autonomy and the need to protect it,

962 _{J. Childress, "The Place of Autonomy in Bioethics", 20 Hastings Center Report, 1990, 12, 12. K. Möller,}

"Two Conceptions of Positive Liberty", in: 29 Oxford Journal of Legal Studies, 2009, 757 et seq. F. Miller/A.

Wertheimer (eds.), The Ethics of Consent: Theory and Practice, 2009 and P. Candilis/C. Lidz, "Advances in

Informed Consent", in: F. Miller/A. Wertheimer (eds.), The Ethics of Consent: Theory and Practice, 2009,

329 et seq.

963

C. Schneider, The Practice of Autonomy, 1998, 3.

964 _{See J. Nida-Rümelin, "Autonomie und Würde Angesichts des Eigenen Todes", Beitrag zur Tagung Sterbehilfe.}

Recht auf Leidfreies Leben? an der FU Berlin, November 23 and 24, 2007, 12. See also Beyleveld/Brownsword, note 662, 4.

965

Explanatory Memorandum, note 8, 60- 61.

966 _{Schneider, The Practice of Autonomy, note 963, 3. D. Weisstub/G. Diaz Pintos, Autonomy and Human Rights in}

generally is rooted in human beings' unique capacity to reason, “their capacity to decide upon, to revise, and rationally to pursue a conception of the good.”967

A second shared characteristic of how the concept of autonomy is used in a human rights context, is that it is in one way or another about 'self-government' and freedom from manipulative

influence.968 _{It aims, to varying degrees to give a person some control over his or her “physical}

integrity, liberty, expression, religious and moral beliefs, private and family life, property, personal data and more.”969 _{Individual autonomy thus implies the capacity to exercise one's capacity to}

reason and to live according to motives that are taken to be one's own i.e. not the product of manipulative or distorting external forces.970 _{It is the “capacity to be selfdetermining, to be in}

control of one's own life.”971 _{As such accounts of autonomy contrast with those of “heteronomous”}

theories that for example credit the state, society, a deity or institutions, with the capacity to determine an individual's desires and choices and to obstruct his or her ability to follow through with these choices and desires.972

Thirdly, autonomy in the context of human rights is usually relational, in that autonomy is located in the relationship between the state and its citizen. It moulds this relationship by making conduct of the state impermissible or incompatible with the autonomy of the person. In particular, the state has to ensure that an individual is freedom from paternalistic interference by the state. For

example “the prohibition of certain religions on the ground that they are religiously wrong or misguided or an insult to God would be a violation of autonomy.”973

Yet, while in one way or another many human rights scholars agree on these three properties of the concept of autonomy in a human rights context they nevertheless to this date argue about what autonomy exactly implies and which conduct it necessitates. It will be seen below how and to what extent framing issues of bioethical relevance by reference to the concept of autonomy has

implications for the bioethical debate.

967 _{Möller, note 962, 759 and Nida-Rümelin, "Autonomie und Würde Angesichts des Eigenen Todes", Beitrag zur}

Tagung Sterbehilfe. Recht auf Leidfreies Leben? an der FU Berlin, note 964. In one form or another it thereby replicates and extends the above described Kantian idea of autonomy. J. Christman, "Informed Consent", in: E. Zalta (ed.), Stanford Encyclopedia of Philosophy, Summer 2010 Edition, at: http://plato.stanford.edu/contents.html (last visisted 10.12.09), arguing that "it should, however, be noted that this concept of autonomy is a rather modern development. That is, "putting moral weight on an individual's ability to govern herself, independent of her place in a metaphysical order or her role in social structures and political institutions is very much the product of the

Enlightenment humanism of which contemporary liberal political philosophy is an offshoot."

968 _{Dworkin, Taking Rights Seriously, note 788, 61 et seq.}

969 _{Möller, note 962, 759, showing how autonomy is reflected in national constitutions.}

970 _{Schneider, The Practice of Autonomy, note 963, 3.}

971 _{R. Norman, "Autonomy", in: T. Honderich (ed.), Oxford Companion to Philosophy, 2005, 72 et seq. On}

the relationship between consciousness, autonomy and freedom see in particular J. Nida-Rümelin,

"Bewusstsein und Freiheit", in: D. Ganten/V. Gerhardt/J. Nida-Rümelin (eds.), Funktionen des

Bewusstseins, 2008, 177 et seq.

972 _{Ibid., 73.}

3. Conclusion

In summary, the liberal, enlightenment and natural law traditions of thought have a significant impact on the ideas and ideals that constitute and inform human rights, on the structure giving concepts that are relevant in the field and on their content. These traditions, thus, to a large extent, provide the context and background into which human rights and in their extension the standards in the area of bioethics were born and against which they are set to work. Without knowing and understanding this fabric or nomos many concepts used in human rights jurisprudence remain fragmented and/or unclear. As such these traditions form an integral part of human rights jurisprudence.

The way this plays out is that standards in the area of bioethics as human rights standards are rights or principle based standards, that they endorse human rights values, including that of human dignity and individual's autonomy that they include notions of universal validity, that they operate within the confinement of state sovereignty, and that they firmly endorse the value of the individual's autonomy. Implications of framing bioethical debates in this discourse will be