In his compelling novel Blindness, José Saramago tells us about victims stricken by a contagious form of blindness who were quarantined and came to see themselves as pigs, dogs, and “lame crabs.” Of course, they were all human beings - although unable to perceive themselves, or others, as members of the human community. The disciplines of bioethics, health law, and human rights are likewise all members of the broad human rights community, although at times none of them may be able (...) to see the homologies, even when responding to a specific health challenge.The boundaries between bioethics, health law, and human rights are permeable, and border crossings, including crossings by blind practitioners, are common. Two working hypotheses form the intellectual framework of this article: we can more effectively address the major health issues of our day if we harmonize all three disciplines; and American bioethics can be reborn as a global force by accepting its Nuremberg roots and actively engaging in a health and human rights agenda. (shrink)

The principle of respect for human dignity plays a crucial role in the emerging global norms relating to bioethics, in particular in the UNESCO Universal Declaration on Bioethics and Human Rights. This instrument, which is a legal, not merely an ethical document, can be regarded as an extension of international human rights law into the field of biomedicine. Although the Declaration does not explicitly define human dignity, it would be a mistake to see the emphasis put on this notion as (...) a mere rhetorical strategy. Rather, the appeal to dignity reflects a real concern about the need to promote respect both for the intrinsic worth of human beings and for the integrity of the human species. But dignity alone cannot solve most of the dilemmas posed by biomedical practice. This is why international biolaw combines, on the one hand, the appeal to human dignity as an overarching principle with, on the other hand, the recourse to human rights, which provide an effective and practical way forward for dealing with bioethical issues at a global level. (shrink)

This paper targets an orphan topic in research ethics, namely the so called principle of the primacy of the human being, which states that the interests of the human subject should always take precedence over the interests of science and society. Although the principle occupies the central position in the majority of international ethical and legal standards for biomedical research, it has been commented in the literature mainly in passing. With a few notable exceptions, there is little in-depth discussion about (...) the meaning and role of the principle. Several authors note that the principle is vogue, ambiguous and apparently conflicting with the accepted practice of conducting non-beneficial research on individuals unable to give consent. There are opinions that it is just “a vacuous figure of speech” and should be abandoned. This paper argues that the primacy principle is far from being “a vacuous figure of speech”, rather it should be seen as a threefold concept: a fundamental interpretative rule, a procedural rule, and a substantive rule aimed at protecting research subjects from instrumental treatment and unacceptable risks. This interpretation tracks back to the principle regulatory and normative origins in the Declaration of Helsinki of 1975, but also acknowledges changes in research ethics and practice, which took place at the turn on the twentieth and twenty-first centuries. Thus, the proposed reading of the principle is not only original, but also historically grounded and normatively fruitful. It provides a fresh and ethically rich perspective on extensively debated, but still controversial problem of an upper limit of permissible risks in non-beneficial studies. (shrink)

Genetic enhancement is the modification of the human genome for the purpose of improving capacities or ‘adding in’ desired characteristics. Although this technology is still largely futuristic, debate over the moral issues it raises has been significant. George Annas has recently leveled a new attack against genetic enhancement, drawing on human rights as his primary weapon. I argue that Annas’ appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument (...) is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are ‘trumps’: if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas’ argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology. (shrink)

Humanitarian emergencies and natural disasters can overwhelm the capacity of local and national agencies to respond to the needs of affected populations. In such cases, international relief organizations are frequently involved in the provision of emergency assistance. Health care professionals play a key role in these interventions. This practice environment is significantly different from the context of health care delivery in the home countries of expatriate health care professionals. Clinicians who travel from a developed nation to a resource-poor setting where (...) a humanitarian crisis has occurred experience a shift of professional, social, cultural and regulatory environments. In this dissertation I examine the ethics of health care practice in humanitarian work. I evaluate the literature of global bioethics, global health ethics and the ethics of humanitarian assistance, and consider the contributions of various ethics frameworks and normative approaches. I also develop a set of questions to guide health care professionals as they address ethically complex issues arising in clinical practice during humanitarian crises. In the empirical component of this research program I use Interpretive Description methodology to examine the moral experience of health care professionals in humanitarian relief work, and clinician experiences of resources and constraints for addressing ethical issues in humanitarian settings. Building upon the inductively derived findings, I argue for strategies and approaches that humanitarian organizations, project teams, and health care professionals can adopt to respond to the ethics of this field of practice. I also provide a critical review of Interpretive Description methodology. The research presented in this dissertation makes an important contribution to the ethical analysis of health care practice in humanitarian work. (shrink)

Ethical issues in international nursing research are identified and the perspectives of the International Centre for Nursing Ethics are offered in an effort to develop an international consensus of ethical behaviour in research. First, theoretical issues are reviewed, then initial conditions for ethical conduct are defined, and protocol design and procedure considerations are examined. A concerted effort is made to identify and avoid a western bias. Broad guiding principles for designing and reviewing research are offered: (1) respect for persons; (2) (...) beneficence; (3) justice; (4) respect for community; and (5) contextual caring. A collaborative model of the researcher-participant relationship is suggested and discussed. (shrink)

If we want to take firm the importance of universal principles in Bioethics, but at the same time we want to take seriously the importance of cultural diversity and pluralism, it is necessary to adopt a multifaceted approach. In the article I argue that a possible way out is a sort of hermeneutic approach, in order to reduce the ambivalence that stems from the dual recognition of cultural diversity and universal value of human rights. Through this approach conflicting principles and (...) traditions can be harmonized within a common framework, at least to some extent. Such an approach, in my perspective, can be implemented as a strategy of interpretation, which can hold together different conceptions and common principles. (shrink)