The quest for universality: reflections on the Universal Draft Declaration on Bioethics and Human Rights

This essay focuses on two underlying presumptions that impinge on the effort of UNESCO to engender universal agreement on a set of bioethical norms: the conception of universality that pervades much of the document, and its disregard of structural inequalities that significantly impact health. Drawing on other UN system documents and recent feminist bioethics scholarship, we argue that the formulation of universal principles should not rely solely on shared ethical values, as the draft document affirms, but also on differences in ethical values that obtain across cultures. UNESCO's earlier work on gender mainstreaming illustrates the necessity of thinking from multiple perspectives in generating universal norms. The declaration asserts the 'fundamental equality of all human beings in dignity and rights'(1) and insists that 'the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition'(2) yet it does not explicitly recognize disparities of power and wealth that deny equal dignity and rights to many. Without attention to structural (as opposed to merely accidental) inequities, UNESCO's invocation of rights is so abstract as to be incompatible with its avowed intention.     

Human Rights and Japanese Bioethics

The main contentions of this paper are twofold. First, there is a more than century-old Japanese tradition of human rights based on a fusion of Western concepts of natural rights and a radical reinterpretation of Confucianism, the major proponent of which was the Japanese thinker Nakae Chomin. Secondly, this tradition, although a minority view, is crucial for remedying the serious defects in the present Japanese medical system.
In the latter half of the nineteenth century, Nakae Chomin sought to reinterpret Chinese tradition, especially Confucianism, by injecting the concepts of popular sovereignty and democratic equality, drawn from Western sources. The resulting view maintained the Confucian commitment to a moral nexus for society, but replaced hierarchy with egalitarianism.
The pressing need for such an approach to patients' rights in present-day Japan is illustrated by two recent cases: the photographing and commercial exploitation of patients' genitals without serious response by authorities, and the attempt by physicians to manipulate the time of death and, possibly, to improperly pressure family members in order to transplant organs from the brain-dead victim of a criminal assault.
Such problems stem from hierarchy and paternalism, which seem to be a legacy of the rapid, state-sponsored introduction of Western medicine in the mid-nineteenth century, and in particular from the government's adoption of and support for German military medicine as a model for Japan.     

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.     

Bioethics and Disability Rights: Conflicting Values and Perspectives

Continuing tensions exist between mainstream bioethics and advocates of the disability rights movement. This paper explores some of the grounds for those tensions as exemplified in From Chance to Choice: Genetics and Justice by Allen Buchanan and coauthors, a book by four prominent bioethicists that is critical of the disability rights movement. One set of factors involves the nature of disability and impairment. A second set involves presumptions regarding social values, including the importance of intelligence in relation to other human characteristics, competition as the basis of social organization, and the nature of the parent–child relationship. The authors’ disapproval of certain aspects of the disability rights movement can be seen to be associated with particular positions regarding these factors. Although the authors intend to use a method of ‘broad reflective equilibrium,’ we argue that their idiosyncratic commitment to particular concepts of disability and particular social values produces a narrowing of the moral significance of their conclusions regarding disability rights.     

Afterword to "Anthropology and Human Rights in a New Key": The Social Life of Human Rights

In this article, I argue for an ethnographic approach to human rights that recognizes the plural and fragmentary nature of the international rights regime and the ideological promiscuity of rights talk. Instead of determining in advance the social or political character of rights, anthropologists could profitably draw from the insights of early-20th-century "legal realists" and look closely at the underlying assumptions and hidden practices of political and legal processes. Studying the "social life of human rights" would involve focusing on, inter alia, the performative dimensions of human rights, the dynamics of social mobilization, and the attitudinal changes of elite and nonelite social actors towards formulations of "rights" and "justice," both inside and outside the legal process. I conclude with a review of recent anthropological research on human rights epistemology and evaluate its implications for human rights policy.     

I-proteins - a proposed switch in myotubularin function

In this article, we consider the functions of the myotubularins - a large family of phosphoinositide 3-phosphatases. By analogy with the phosphatidylinositol 3-phosphatase PTEN (phosphatase and tensin homolog deleted in chromosome ten) and many protein phosphatases, it has been proposed that the primary function of this protein family is to regulate substrate levels, in this case phosphatidylinositol (3)-phosphate. We propose an alternate, or additional, function that is analogous to the G-protein family of phosphatases, which use nucleotide-dependent conformational changes to transduce signals or do mechanical work.     

The President's Council on Bioethics 2002-2004: an overview

The President's Council on Bioethics, headed by Leon Kass, was created by President George W. Bush to advise the President on issues of ethical import raised by advances in biomedical science. Between 2002 and 2004, members of the Council from diverse disciplines addressed topics such as human cloning, stem cell research, assisted reproduction, and medical interventions intended to enhance human capability or appearance. This article provides background on the Council and reviews its published reports. It also considers key definitions and distinctions, specific recommendations of the Council, and positions articulated by members who contributed to the development of its reports.     

Relativism and the Search for Human Rights

The theory of ethical relativism has been the subject of much misunderstanding. It is argued that the central insight of relativism is enculturation and not tolerance. Relativism is characterized as a metaethical theory about the nature of moral perceptions. As such it is logically consistent, permits moral criticism, and is compatible with cross-cultural universals. The existence of universals may indicate global support for particular human rights.     

Bioethics and law: a developmental perspective

In most Western countries, health law bioethics are strongly intertwined. This strong connection is the result of some specific factors that, in the early years of these disciplines, facilitated a rapid development of both. In this paper, I analyse these factors and construe a development theory existing of three phases, or ideal-typical models.
In the moralistic-paternalistic model, there is almost no health law of explicit medical ethics and the little law there is is usually based on traditional morality, combined with paternalist motives, the objections to this modal are that its paternalism and moralism are unacceptable, that it is too static and knows no external control mechanisms.
In the liberal model, which is now dominant on most Western countries, law and ethics closely cooperate and converge, both disciplines use the same framework for analysis: they are product-oriented rather than practice-oriented; they use the same conceptual categories, they focus on the minimally decent rather than the ideal, and they are committed to the same substantive normative theory in which patient autonomy and patient rights are central. However, each of these four characteristics also result in a certain one-sidedness.
In some countries, a third model is emerging. In this postliberal model, health law is more modest and acknowledges its inherent and normative limits, whereas ethics takes a richer and most ambitious self image. As a result health law and ethics will partly diverge again.     

Introduction to "Anthropology and Human Rights in a New Key"

In this "In Focus" introduction, I begin by offering an overview of anthropology's engagements with human rights following the American Anthropological Association's (AAA) 1947 "Statement on Human Rights." After offering a rereading of the Statement, I describe the two major anthropological orientations to human rights that emerged in the 1980s and 1990s, following several decades of relative disengagement. Finally, I locate the articles in relation to this history and indicate how, when taken as a whole, they express a new key or register within which human rights can be studied, critiqued, and advanced through anthropological forms of knowledge. This "In Focus" is in part an argument for an essentially ecumenical anthropology of human rights, one that can tolerate, and indeed encourage, approaches that are both fundamentally critical of contemporary human rights regimes and politically or ethically committed to these same regimes.