This response addresses criticisms in this journal of an Editorial written by Willem Landman and Udo Schuklenk. I demonstrate that the UNESCO Declaration on Bioethics and Human Rights is in crucial aspects deficient, despite attempts in this journal to defend the Declaration against its critics. I focus on individual versus societal interests, research ethics, informed consent and the use of “human dignity” to illustrate the weaknesses of the UNESCO Declaration on Bioethics and Human Rights. This article concludes with reflections on (...) what documents such as the UNESCO Declaration on Bioethics and Human Rights ought to be called to avoid the mislabelling of what essentially are policy documents. (shrink)

ABSTRACT International research enrolling human subjects has raised an ethical concern regarding the just distribution of benefits between the countries that design the research and the host communities. Although several universal declarations have expressed this concern, a gap between theory and practice continues to exist, as well as a significant divergence between the design of the research protocol and the social context where it will be implemented. Although institutional review boards have made a valuable effort to evaluate international research, their (...) sensitivity to the just sharing of research benefits as well as their attention to the social context must be evaluated. This article analyzes the distribution of benefits in a review of international research in Mexico and produces an ethical reflection based on the results. (shrink)

As the technosciences, including genomics, develop into a global phenomenon, the question inevitably emerges whether and to what extent bioethics can and should become a globalised phenomenon as well. Could we somehow articulate a set of core principles or values that ought to be respected worldwide and that could serve as a universal guide or blueprint for bioethical regulations for embedding biotechnologies in various countries? This article considers one universal declaration, the UNESCO Declaration on Bioethics and Human Rights ( 2005a (...) ). General criticisms made in a recent special issue of Developing World Bioethics are that the concepts used in the Declaration are too general and vague to generate real commitment; that the so-called universal values are not universal; and, that UNESCO should not be engaged in producing such declarations which are the domain of professional bioethicists. This article considers these and other criticisms in detail and presents an example of an event in which the Declaration was used: the request by the Republic of Sakha, in Siberia, for a UNESCO delegation to advise on the initiation of a bioethics programme. The Declaration was intended to provide an adequate “framework of principles and procedures to guide states in the formulation of their legislation, policies and other instruments in the field of bioethics” (article 2a). The Declaration was produced, and principles agreed upon, in an interactive and deliberative manner with world-wide expert participation. We argue that the key issue is not whether the general principles can be exported worldwide (in principle they can), but rather how processes of implementation and institutionalisation should take shape in different social and cultural contexts. In particular, broader publics are not routinely involved in bioethical debate and policy-making processes worldwide. (shrink)

Bioethics is best viewed as both a second-order discipline and also part of public discourse. Since their goals differ, some bioethical activities are more usefully viewed as advancing public discourse than academic disciplines. For example, the “Universal Declaration on Bioethics and Human Rights” sponsored by the United Nations Educational, Scientific, and Cultural Organization seeks to promote ethical guidance on bioethical issues. From the vantage of philosophical ethics, it fails to rank or specify its stated principles, justify controversial principles, clarify key (...) terms, or say what is meant by calling potentially conflicting norms “foundational.” From the vantage of improving the public discourse about bioethical problems and seeking ethical solutions in the public arena, however, this document may have an important role. The goals and relations between bioethics as a second-order discipline and public discourse are explored. (shrink)

The field of bioethics continues to struggle with the problem of cultural diversity: can universal principles guide ethical decision making, regardless of the culture in which those decisions take place? Or should bioethical principles be derived from the moral traditions of local cultures? Ten Have and Gordijn and Bracanovic defend the universalist position, arguing that respect for cultural diversity in matters ethical will lead to a dangerous cultural relativity where vulnerable patients and research subjects will be harmed. We challenge the (...) premises of moral universalism, showing how this approach imports and imposes moral notions of Western society and leads to harm in non-western cultures. (shrink)

The proper role, if any, for religion-based arguments is a live and sometimes heated issue within the field of bioethics. The issue attracts heat primarily because bioethical analyses influence the outcomes of controversial court cases and help shape legislation in sensitive biopolicy areas. A problem for religious bioethicists who seek to influence biopolicy is that there is now widespread academic and public acceptance, at least within liberal democracies, that the state should not base its policies on any particular religion’s metaphysical (...) claims or esoteric moral system. In response, bioethicists motivated by religious concerns have adopted two identifiable strategies. Sometimes they rely on slippery-slope arguments that, sometimes at least, have empirically testable premises. A more questionable response is the manipulation and misuse of secular-sounding moral language, such as references to “human dignity,” and the plights of groups of people labeled “vulnerable.”. (shrink)

This thesis discusses implications of framing bioethical concerns in international legal discourse. It starts from the observation that legal approaches to questions of bioethical relevance have become dominant frameworks for addressing many bioethical concerns at the international level. In particular, the UN General Assembly has long attempted to regulate human cloning processes through an international Convention. Similarly, UNESCO and the Council of Europe have both addressed a variety of bioethically relevant issues, such as the processing of human genetic data, the (...) ethics of research or organ transplantation within international legal standards. It is in the context of this strong connection between international law, international legal discourse and bioethics that this thesis seeks to analyse what exactly happens when issues of bioethical relevance are discussed within such a framework, how this affects the way bioethical issues are conceptualized, conceived of and dealt with, and, ultimately, how well-suited or successful international legal discourse is in its attempt to resolve current bioethical questions. Following the methodological approach of discourse theory, this thesis bases its analysis on the assumption that where and when international legal standards, as manifestations of an international legal discourse, serve as framework for bioethical debate that also somewhat defines how bioethically relevant issues are approached, thought of and dealt with within that framework, that it somewhat determines what methods are used to resolve such issues and that it somewhat limits the range of conceivable and viable solutions to these issue. The thesis thereby does not aim to demonise or abrogate legal approaches to bioethics and it does not understand the implications discussed in this thesis to be necessarily good or bad. To the contrary, it will be shown that legal approaches to bioethics can and have contributed to the development of the field in several important ways. Yet, this thesis also shows that it is worthwhile to closely examine implications that follow from a specific legal approach to bioethical issues as these implications are not always easily perceived. Given the important, and often dominant or near exclusive role of international law and legal discourse in the area of bioethics as well as the former's strong influence on bioethical debates as a whole, the implications of addressing questions of bioethical relevance within an international legal discourse should at least be understood and acknowledged, a contribution that this thesis aims to make. Moreover, only if these implications are understood is it possible to ask whether engaging in that type of discourse is at all a valuable enterprise and whether or not international legal standards directly addressed to questions of bioethical relevance constitute a suitable means to effectively address questions in the area of bioethics. (shrink)