The following article analyzes the process of conception, elaboration, and adoption of the Universal Declaration of Bioethics and Human Rights, and reflects on the lessons it might hold for public bioethics on the international level. The author was involved in the process at a variety of levels: he provided advice to the IBC on behalf of the President's Council of Bioethics; he served as the U.S. representative to UNESCO's Intergovernmental Bioethics Committee; and led the U.S. Delegation in the multilateral negotiation (...) of Government experts that culminated in the adoption of the declaration in its final form. The author is currently serving a 4-year term as a member of UNESCO's International Bioethics Committee. (shrink)

In this issue, Raphael Cohen-Almagor reviews some of the terms used in the discussion of bioethical issues at the end of a patient's life; he argues that they are “valueladen” and serve “primarily the physicians, at times at the expense of the patients’ best interest.” Each of the following terms comes under scrutiny: “death with dignity,” “persistent vegetative state,” “futility,” “double effect,” and “brain death.” He argues that these concepts, developed in recent decades, “have generated an unhealthy atmosphere for patients, (...) which might lead to undesirable actions at the end of patients’ lives.” He issues a plea to discontinue the use of the term “persistent vegetative state” because it is dehumanizing, to explain “double effect” and “futility” in detail and with sincerity, and to clarify the motivation for using these terms and others. He warns physicians not to use terminology that is offensive to patients and loved ones or that weakens their patients’ will to live. (shrink)

In this issue, Raphael Cohen-Almagor reviews some of the terms used in the discussion of bioethical issues at the end of a patient's life; he argues that they are “valueladen” and serve “primarily the physicians, at times at the expense of the patients’ best interest.” Each of the following terms comes under scrutiny: “death with dignity,” “persistent vegetative state,” “futility,” “double effect,” and “brain death.” He argues that these concepts, developed in recent decades, “have generated an unhealthy atmosphere for patients, (...) which might lead to undesirable actions at the end of patients’ lives.” He issues a plea to discontinue the use of the term “persistent vegetative state” because it is dehumanizing, to explain “double effect” and “futility” in detail and with sincerity, and to clarify the motivation for using these terms and others. He warns physicians not to use terminology that is offensive to patients and loved ones or that weakens their patients’ will to live. (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)

Within this thesis, I argue for an interpretive approach to bioethics in pediatric intensive care. I begin by outlining the dominant bioethical doctrine that defines standards for ethical care in critically ill children. I critique this doctrine as legalistic and acultural. Drawing largely on the ideas of Charles Taylor, I call for a reconception of bioethics and propose an interpretive framework that is centred on culture and context. Finally, I illustrate this interpretive approach through a comparative study of two cases (...) in pediatric intensive care: the narratives of Marc and Larry. (shrink)

Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philosophy and theology, not law. (...) In another account, law has deeply shaped bioethics from the start, forging its central commitment to the rights of patients and research subjects and the fields imposition of broad fiduciary responsibilities on health care professionals and researchers.In addition to debating how to properly describe laws historical relationship to bioethics, commentators have argued over whether laws influence in bioethics is now good or bad. (shrink)