One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it (...) has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks. (shrink)

The member states of the United Nations Educational, Scientific and Cultural Organization (UNESCO) decided in 2002 that ethics is one of the five priority areas of the organization. This article describes three categories of past and current activities in the ethics of science and technology, in particular bioethics. The first category is the global standard setting with the Universal Declaration on Bioethics and Human Rights as the most recently adopted normative instrument. The second category focuses on capacity building in order (...) to enable member states to apply the provisions of the declarations, through, for example, the establishment of national bioethics committees, the introduction of ethics teaching programs, and drafting of legislation and guidelines. The final category of activities is awareness raising through publications, events, and conferences. The challenges and difficulties UNESCO may face in its various activities are highlighted. (shrink)

ABSTRACT 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. (shrink)

The Universal Declaration on Bioethics and Human Rights adopted by the United Nations Educational, Scientific, and Cultural Organisation on 19 October 2005 is an important step in the search for global minimum standards in biomedical research and clinical practice. As a member of UNESCO International Bioethics Committee, I participated in the drafting of this document. Drawing on this experience, the principal features of the Declaration are outlined, before responding to two general charges that have been levelled at UNESCO’s bioethical activities (...) and at this particular document, are outlined. One criticism is to the effect that UNESCO is exceeding its mandate by drafting such bioethical instruments—in particular, the charge is that it is trespassing on a topic that lies in the responsibility of the World Health Organization. The second criticism is that UNESCO’s reliance on international human rights norms is inappropriate. (shrink)

ABSTRACT The authors analyse and assess the Universal Draft Declaration on Bioethics and Human Rights published by UNESCO. They argue that the Draft has two main weaknesses. It unnecessarily confines the scope of bioethics to life sciences and their practical applications. And it fails to spell out the intended role of human dignity in international ethical regulation.

ABSTRACT The authors analyse and assess the Universal Draft Declaration on Bioethics and Human Rights published by UNESCO. They argue that the Draft has two main weaknesses. It unnecessarily confines the scope of bioethics to life sciences and their practical applications. And it fails to spell out the intended role of human dignity in international ethical regulation.

ABSTRACTThe latest 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. (shrink)

ABSTRACTIn 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 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. (shrink)

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. (shrink)

This paper argues that the HFEA’s recent report on sex selection abdicates its responsibility to give its own authentic advice on the matters within its remit, that it accepts arguments and conclusions that are implausible on the face of it and where they depend on empirical claims, produces no empirical evidence whatsoever, but relies on reckless speculation as to what the “facts” are likely to be. Finally, having committed itself to what I call the “democratic presumption”, that human freedom will (...) not be constrained unless very good and powerful reasons can be produced to justify such infringement of liberty, the HFEA simply reformulates the democratic presumption as saying the opposite—namely that freedom may only be exercised if powerful justifications are produced for any exercise of liberty. (shrink)

: The member states of the United Nations Educational, Scientific and Cultural Organization (UNESCO) decided in 2002 that ethics is one of the five priority areas of the organization. This article describes three categories of past and current activities in the ethics of science and technology, in particular bioethics. The first category is the global standard setting with the Universal Declaration on Bioethics and Human Rights as the most recently adopted normative instrument. The second category focuses on capacity building in (...) order to enable member states to apply the provisions of the declarations, through, for example, the establishment of national bioethics committees, the introduction of ethics teaching programs, and drafting of legislation and guidelines. The final category of activities is awareness raising through publications, events, and conferences. The challenges and difficulties UNESCO may face in its various activities are highlighted. (shrink)

ABSTRACTA number of problems plague universal declarations. To the extent that those drafting and adopting the declaration represent a range of different views, consensus can only be obtained if the declaration makes minimalist claims that all can support, or makes claims that are vague enough that they can be interpreted to everybody's satisfaction. To the extent that a universal declaration avoids these problems, and takes an unequivocal and controversial stand, it does so by privileging the view that is hegemonic . (...) After discussing these problems I ask whether such declarations could nonetheless do any good. (shrink)

ABSTRACT A number of problems plague universal declarations. To the extent that those drafting and adopting the declaration represent a range of different views, consensus can only be obtained if the declaration makes minimalist claims that all can support, or makes claims that are vague enough that they can be interpreted to everybody's satisfaction. To the extent that a universal declaration avoids these problems, and takes an unequivocal and controversial stand, it does so by privileging the view that is hegemonic (...) (at least among those responsible for the declaration). After discussing these problems I ask whether such declarations could nonetheless do any good. (shrink)

Within academic circles, the “deficit” model of public understanding of science has been subject to increasing critical scrutiny by those who favor more constructivist approaches. These suggest that “the public” can articulate sophisticated ideas about the social and ethical implications of science regardless of their level of technical knowledge. The seminal studies following constructivist approaches have generally involved small-scale qualitative investigations, which have minimized the pre-framing of issues to a greater or lesser extent. This article describes the Gene Week Project, (...) sponsored by the Wellcome Trust, which attempted to extend this work to a large-scale consultation on genetics and health through the medium of a local daily newspaper. Readers were invited to respond to a set of open-ended questions that accompanied stimulus material published each day for five consecutive weekdays. The articles were written with the intention of extending the limited range of discourses around genetics and biotechnology that are usually presented by the popular media. Responses raised overarching issues about the place of emerging health technologies in society reminiscent of previous open-ended consultations in this field. The paper ends with a critical discussion about the potential of this method to contribute to the further development of open-ended public consultations. (shrink)