Unesco's proposed Declaration on Bioethics and Human Rights - a bland compromise

The latest (June 2005) draft of UNESCO's proposed Universal Declaration on Bioethics and Human Rights is a major disappointment. The committee of government 'experts' that produced it made sure that it would not introduce any new obligations for States, and so the document simply restates existing agreements and lists desirable goals without specifying how they can be achieved. This article focuses on the shortcomings of the document as it would apply to health care. These shortcomings are evident in the document's scope, aims and principles. The conclusion is that if UNESCO still thinks that such a declaration is needed, it should produce either an ethical document addressed to individuals and groups, which would be primarily educational in nature, or a legal document addressed to States, which should not have the word 'ethics' in its title.     

The incompatibility of the United Nations' goals and conventionalist ethical relativism

The Universal Draft Declaration on Bioethics and Human Rights seeks to provide moral direction to nations and their citizens on a series of bioethical concerns. In articulating principles, it ranks respect for human rights, human dignity and fundamental freedoms ahead of respect for cultural diversity and pluralism. This ranking is controversial because it entails the rejection of the popular theory, conventionalist ethical relativism. If consistently defended, this theory also undercuts other United Nations activities that assume member states and people around the world can reach trans-cultural judgments having moral authority about health, pollution, aggression, rights, slavery, and so on. To illustrate problems with conventionalist ethical relativism and the importance of rejecting it for reasons of health, human rights, human dignity and fundamental freedoms, the widespread practice of female genital circumcision or cutting is discussed. These surgeries are virtually a test case for conventionalist ethical relativism since they are widely supported within these cultures as religious and health practices and widely condemned outside them, including by the United Nations.     

Universal norms and conflicting values

While UNESCO's Universal Draft Declaration on Bioethics and Human Rights highlights appropriate ethical values, its principles are stated in absolute terms and conflict with one another. The Draft Declaration fails to sufficiently address the possibility of conflict between principles, and it provides no real guidance on how to strike a balance between them in cases where conflict occurs. The document's inadequate treatment of conflicting values is revealed by examination of cases where principles aimed at the promotion of autonomy and liberty conflict with those aimed at benefit maximization and harm minimization. I argue that liberty (and autonomy) may be less important in the context of health care than in other contexts, and I conclude by suggesting specific ways in which some of UNESCO's principles should be revised in order to better address the reality of conflicting values.     

Not Fit for Purpose: The Ethical Guidelines of the Indian Council of Medical Research

In 2006, the Indian Council of Medical Research (ICMR) published its ‘Ethical guidelines for Biomedical Research on human participants’. The intention was to translate international ethical standards into locally and culturally appropriate norms and values to help biomedical researchers in India to conduct ethical research and thereby safeguard the interest of human subjects. Unfortunately, it is apparent that the guideline is not fit for purpose. In addition to problems with the structure and clarity of the guidelines, there are several serious omissions and contradictions in the recommendations. In this paper, we take a close look at the two key chapters and highlight some of the striking flaws in this important document. We conclude that ethics committees and national authorities should not lose sight of international ethical standards while incorporating local reality and cultural and social values, as focusing too much on the local context could compromise the safety of human subjects in biomedical research, particularly in India.     

Cultural values embodying universal norms: a critique of a popular assumption about cultures and human rights

In Western and non-Western societies, it is a widely held belief that the concept of human rights is, by and large, a Western cultural norm, often at odds with non-Western cultures and, therefore, not applicable in non-Western societies. The Universal Draft Declaration on Bioethics and Human Rights reflects this deep-rooted and popular assumption. By using Chinese culture(s) as an illustration, this article points out the problems of this widespread misconception and stereotypical view of cultures and human rights. It highlights the often ignored positive elements in Chinese cultures that promote and embody universal human values such as human dignity and human rights. It concludes, accordingly, with concrete suggestions on how to modify the Declaration.     

END‐OF‐LIFE CARE IN THE 21st CENTURY: ADVANCE DIRECTIVES IN UNIVERSAL RIGHTS DISCOURSE

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making.     

Reconciling international human rights and cultural relativism: the case of female circumcision

How can we reconcile, in a non-ethnocentric fashion, the enforcement of international, universal human rights standards with the protection of cultural diversity? Examining this question, taking the controversy over female circumcision as a case study, this article will try to bridge the gap between the traditional anthropological view that human rights are non-existent -- or completely relativised to particular cultures -- and the view of Western naturalistic philosophers (including Lockeian philosophers in the natural rights tradition, and Aquinas and neo-Thomists in the natural law tradition) that they are universal -- simply derived from a basic human nature we all share. After briefly defending a universalist conception of human rights, the article will provide a critique of female circumcision as a human rights violation by three principal means: by an internal critique of the practice using the condoning cultures' own functionalist criteria; by identifying supra-national norms the cultures subscribe to which conflict with the practice; and by the identification of traditional and novel values in the cultures, conducive to those norms. Through this analysis, it will be seen that cultural survival, diversity and flourishing need not be incompatible with upholding international, universal human rights standards.     

Ethical, legal and social issues of genetically modifying insect vectors for public health

The use of genetically modified (GM) insects for control of human disease can be consistent with common ethical norms of international society to reduce human suffering. This paper considers a range of ethical issues including animal rights, informed consent, community consensus and environmental viewpoints. Each community needs to decide its own priorities for methodology of disease policy guidance for ethical genetic engineering, and to negotiate with neighbouring countries. The approach to genetically modify insects raises few intrinsic ethical issues; however, important environmental and human health concerns need to be assessed before release of any GM insects. The policy that each community adopts should be the product of open dialogue involving all sectors of society. It can be expected that this process will take years and not all communities will endorse genetic control approaches to insect vectors.     

The Universal Declaration on the Human Genome and Human Rights

Since 1985, UNESCO studies ethical questions arising in genetics. In 1992, I established the International Bioethics Committee at UNESCO with the mission to draft the Universal Declaration on the Human Genome and Human Rights, which was adopted by UNESCO in 1997 and the United Nations in 1998. The Declaration relates the human genome with human dignity, deals with the rights of the persons concerned by human genome research and provides a reference legal framework for both stimulating the ethical debate and the harmonization of the law worldwide, favouring useful developments that respect human dignity.     

Torture by Cieng: ethical theory meets social practice among the Dinka Agaar of south Sudan

Here I detail violence in South Sudan by first discussing a specific Dinka Agaar practice alongside existing discourses on the social aspects of violence and universal human rights, then I show how these acts had meaning and purpose using data from personal accounts of violence. I posit that the violence described was consistent with Dinka Agaar concepts of justice and basic human rights and that it cannot be judged against any universal human rights standard, devoid of local context or of an overarching metanarrative. These events highlight conflicting subjectivities, ethical norms, and the painful difficulties inherent to advocacy in areas of conflict. Viewed from the perspective of the larger social unit, it is easy to see how violence was required to end violence. However, witnessing punitive violence purposefully enacted on innocent individuals to achieve peace has the potential to create conflicting positions that modern anthropological discourse cannot reconcile.     

Talking culture, crying health, hoping for nothing: surviving the many flyers above the human rights global cuckoo's nests

Today's talk about any health issue is part of a wider web of neoliberal destructive processes of which all fall into the category of discriminating populations and their cultures, downgrading their right to life and violating their human dignity. Poor health, poverty stricken health systems and screaming epidemiological factors make just one more triangle of the successive visible consequences of destruction that equals to the violation of human dignity, to begin with. Yet no correction is possible since every problem is tied to the double standard perceivement of Human Rights. The author is engaged in presenting a need of a deeper auto-reflexive work-through of our human approachments and biological realities. This urgent stance is based on the new, set by Kalny (2009) and Baxi (2006), orientation towards a critical reading of the Human Rights and the advocacy toward differentiating between the politics for human rights and politics of human rights (the later being the politics of rights instrumentalization). Health and its un-sustainability is one of the most dramatic areas in which this differentiation of ones approaches is dramatically felt and needed. The end conclusions are envisioned to support the already existing field of a number of dedicated critical medical anthropologists, as well as authors across all fields, in their demand for, nothing more or less than, the dignity for the populations that they/we daily represent.     

Can respect be key to gender justice?

Equality and respect are, together with dignity, considered foundational values in international human rights discourse. While equality in particular has been established as a widely accepted goal in the women's rights movement, respect is, however, less commonly invoked. Based on long‐term ethnographic fieldwork conducted among the Arsi Oromo of Ethiopia, this article examines the notion of wayyuu, a tacit moral model of respect and sacredness that is central to institutions and norms that have secured women certain rights and power. These norms and institutions represent a challenge to the liberal feminist conceptualization of gender equality that dominates international women's rights discourse. Drawing on theories of respect and on feminist and anthropological discussions of equality, I argue that even though there are certain limitations inherent in wayyuu, the sacredness it entails and the implications this has had for women's status and power among the Arsi Oromo call for an exploration of respect not as an alternative to equality, but as a complementary notion which to a greater extent could be included in global discussions of gender justice.     

YET ANOTHER GUIDELINE? THE UNESCO DRAFT DECLARATION

Some people might argue that there are already too many different documents, guidelines, and regulations in bioethics. Some overlap with one another, some are advisory and lack legal force, others are legally binding in countries, and still others are directed at narrow topics within bioethics, such as HIV/AIDS and human genetics. As the latest document to enter the fray, the UNESCO Declaration has the widest scope of any previous document. It embraces not only research involving human beings, but addresses broader concerns in medicine and healthcare. The UNESCO draft declaration has some minor weaknesses, but on the whole, the strengths outweigh the weaknesses. One weakness is that some items in the draft are stated in a way that is too restrictive, thereby appearing to rule out legitimate activities. A strength of the Declaration is that it is relatively brief, yet at the same time contains sufficient detail to make it something more than a rehearsal of mere pieties. As the most recent of the numerous bioethics and human rights documents, the UNESCO draft draws on many of the earlier documents and also includes some of the most recent thinking about ethical norms and obligations. Perhaps its greatest strength lies not in details of the principles or their implementation, but rather in its stature as an international declaration issued by a United Nations organization.     

Beneficial Coercion in Psychiatric Care: Insights from African Ethico‐Cultural System

There is a ‘catch 22’ situation about applying coercion in psychiatric care. Autonomous choices undeniably are rights of patients. However, emphasizing rights for a mentally‐ill patient could jeopardize the chances of the patient receiving care or endanger the public. Conversely, the beneficial effects of coercion are difficult to predict. Thus, applying coercion in psychiatric care requires delicate balancing of individual‐rights, individual well‐being and public safety, which has not been achieved by current frameworks. Two current frameworks may be distinguished: the civil liberty approach and the Stone model. Both frameworks are restrictive, and not respectful of human dignity. In a civil liberty approach, individuals who are severely mentally‐ill but not dangerous would be denied care because they do not meet the dangerousness threshold or because the use of coercion will not lead to rebirthing of autonomy. This is unsatisfactory. Albeit involuntary interventions such as talk therapies, peer‐support etc., may not always lead to rebirthing of autonomy or free patients from mental illness; they can however help to maintain the dignity of each mentally ill patient. In place of these frameworks, this study proposes a new ethical framework for applying coercion in psychiatric care that is respectful of human dignity. Specifically, it draws on insights from the African ethico‐cultural system by using the Yoruba concept Omo‐olu‐iwabi to develop this new framework. This way, the study shows that only a more respectful approach for applying coercion in psychiatric care can lead to the careful balancing of the competing interests of individual's rights, individual's well‐being and public safety.     

Research ethics: the case with the tule (kuna), Urabbá, Colombia

An ethical analysis was performed during the development of a research project titled "Culture, nourishment and malaria in the Kuna aboriginals of Urabá, Colombia." This project had 2 objectives; (1) to investigate the prevalence of malaria and its relationship with hypovitaminosis A and nutritional status, and (2) to understand the community's conceptions and practices towards malaria. The current paper summarizes reflections concerning the application of ethical principles and moral values during the course of the malaria research project. Two intercultural relationships were clearly defined: the culture of the Tule (Kuna) Indians, with a traditional medical system, and the culture of the research group, focused on the biomedical model. The rationale and the discussion proposed during the writing of the project proposal was presented as well as the dilemmas that developed during the project within the communities. These problems required rapid decision-making in situations for which the scientists had not been adequately prepared. A need was indicated for application of ethical principles to permeate the analysis throughout the research process in a horizontal manner, such that the human dignity of the participants and the ethnicity of the community are preserved above the purposes of the project. In the research process, mediation between the ethics of conviction and the ethics of consequences must take precedence, with both outcomes tied to an informed consent in place during the process. The establishment of national and local research ethics committees was indicated as necessary to preserve the lifestyle and culture of the ethnic groups. These values were seen as endangered given the trading pressures and health policies in a globalized world.     

The Ashley Treatment: Improving Quality of Life or Infringing Dignity and Rights?

The ‘Ashley treatment’ (growth attenuation, removal of the womb and breasts buds of a severely disabled child) has raised much ethical controversy. This article starts from the observation that this debate suffers from a lack of careful philosophical analysis which is essential for an ethical assessment. I focus on two central arguments in the debate, namely an argument defending the treatment based on quality of life and an argument against the treatment based on dignity and rights. My analysis raises doubts as to whether these arguments, as they stand in the debate, are philosophically robust. I reconstruct what form good arguments for and against the treatment should take and which assumptions are needed to defend the according positions. Concerning quality of life (Section 2), I argue that to make a discussion about quality of life possible, it needs to be clear which particular conception of the good life is employed. This has not been sufficiently clear in the debate. I fill this lacuna. Regarding rights and dignity (section 3), I show that there is a remarkable absence of references to general philosophical theories of rights and dignity in the debate about the Ashley treatment. Consequently, this argument against the treatment is not sufficiently developed. I clarify how such an argument should proceed. Such a detailed analysis of arguments is necessary to clear up some confusions and ambiguities in the debate and to shed light on the dilemma that caretakers of severely disabled children face.     

Bioethics: power and injustice: IAB presidential address

A major focus within the modern bioethics debate has been on reshaping power relationships within the doctor-patient relationship. Empowerment of the vulnerable has been achieved through an emphasis on human rights and respect for individual dignity. However, power imbalances remain pervasive within healthcare. To a considerable extent this relates to insufficient attention to social injustice. Such power imbalances together with the development of new forms of power, for example through new genetic biotechnology, raise the spectre of increasing social injustice. Attention will be drawn to the need to extend the bioethics debate to include ethical considerations regarding public health. Changes in political philosophy will also be required to reshape international power relations and improve population health.     

Our social genome?

Apocalyptic views on the natural order, chimeras and genetic engineering should not detract from the fact that medical research, similar to the promotion of health, is a public good. Genomics crosses all species, thereby requiring a global approach that respects human rights and public health priorities. Public trust and public participation in research demand clear stewardship as well as transparent and accountable oversight. Characterizing fundamental genomic data as a public resource might counterbalance the current overemphasis on individual rights but this will not be simple. It is only through an attachment to justice and solidarity that the dignity and well-being of persons, both as humans and as citizens, can truly be fostered.     

Reconciling female genital circumcision with universal human rights

One of the most challenging issues in cross‐cultural bioethics concerns the long‐standing socio‐cultural practice of female genital circumcision (FGC), which is prevalent in many African countries and the Middle East as well as in some Asian and Western countries. It is commonly assumed that FGC, in all its versions, constitutes a gross violation of the universal human rights of health, physical integrity, and individual autonomy and hence should be abolished. This article, however, suggests a mediating approach according to which one form of FGC, the removal of the clitoris foreskin, can be made compatible with the high demands of universal human rights. The argument presupposes the idea that human rights are not absolutist by nature but can be framed in a meaningful, culturally sensitive way. It proposes important limiting conditions that must be met for the practice of FGC to be considered in accordance with the human rights agenda.     

Social Responsibility and the State's Duty to provide Healthcare: An Islamic Ethico‐Legal Perspective

The United Nations Educational, Scientific and Cultural Organization's (UNESCO) Declaration on Bioethics and Human Rights asserts that governments are morally obliged to promote health and to provide access to quality healthcare, essential medicines and adequate nutrition and water to all members of society. According to UNESCO, this obligation is grounded in a moral commitment to promoting fundamental human rights and emerges from the principle of social responsibility. Yet in an era of ethical pluralism and contentions over the universality of human rights conventions, the extent to which the UNESCO Declaration can motivate behaviors and policies rests, at least in part, upon accepting the moral arguments it makes. In this essay I reflect on a state's moral obligation to provide healthcare from the perspective of Islamic moral theology and law. I examine how Islamic ethico‐legal conceptual analogues for human rights and communal responsibility, ?uqūq al‐’ibād and far? al‐kifāyah and other related constructs might be used to advance a moral argument for healthcare provision by the state. Moving from theory to application, I next illustrate how notions of human rights and social responsibility were used by Muslim stakeholders to buttress moral arguments to support American healthcare reform. In this way, the paper advance discourses on a universal bioethics and common morality by bringing into view the concordances and discordances between Islamic ethico‐legal constructs and moral arguments advanced by transnational health policy advocates. It also provides insight into applied Islamic bioethics by demonstrating how Islamic ethico‐legal values might inform the discursive outputs of Muslim organizations.