The Tuskegee Syphilis Experiment (TSE) has shaped African Americans’ views of the American health care system, contributing to a reluctance to participate in biomedical research and a suspicion of the medical system. This essay examines public discourses surrounding President Clinton’s attempt to restore African Americans’ trust by apologizing for the TSE. Through a narrative reading, we illustrate the failure of this text as an attempt to reconcile the United States Public Health Service and the African American public. We conclude by (...) noting the limitations of rhetoric when equal prominence is not given to policy proposals in national apologies. (shrink)

abstract In this paper I take seriously von Hirsch's view that sanctions imposed on offenders need to be compatible with their dignity, and argue that some versions of restorative justice — notably that defended by Braithwaite — can put offenders in the humiliating position of having to make apologies that they do not believe in in order to avoid further bad consequences. Drawing on recent work by Duff I argue that this problem can be avoided by conceiving of restorative justice (...) as an apologetic ritual. This view gives some ground to von Hirsch but presents a view of criminal justice that is distinctively restorative. I conclude by drawing out the differences between my account and that of Duff. (shrink)

To monopolize the scientific data gained by Japanese physicians and researchers from vivisections and other barbarous experiments performed on living humans in biological warfare programs such as Unit 731, immediately after the war the United States government secretly granted those involved immunity from war crimes prosecution, withdrew vital information from the International Military Tribunal for the Far East, and publicly denounced otherwise irrefutable evidence from other sources such as the Russian Khabarovsk trial. Acting in “the national interest” and for the (...) security of the US, authorities in the US tramped justice and morality, and engaged in what the English common law tradition clearly defines as “complicity after the fact.” To repair this historical injustice, the US government should issue an official apology and offer appropriate compensation for having covered up Japanese medical war crimes for six decades. To help prevent similar acts of aiding principal offender in the future, international declarations or codes of human rights and medical ethics should include a clause banning any kind of complicity in any unethical medicine—whether before or after the fact—by any state or group for whatever reasons. (shrink)

ABSTRACT Various mechanisms to ensure the protection of subjects in human research have been suggested, including the presence of witnesses during the informed consent process. For our commentary on the use of witnesses and their potential role and responsibility during the consent process, we start by addressing current guidelines for human subjects research in four Latin American countries. By using examples from public health research, we highlight some of the practical difficulties of using witnessed consent, from becoming a meaningless ritual (...) at one end of the spectrum to the research subject feeling intimidated or coerced to participate at the other. Apart from these practical difficulties, it is unclear what responsibility the witness could and should have. We argue that there are important ethical questions about the role of witnesses that have not been adequately addressed in national and international regulations. This work addresses these gaps and argues that more debate is required to define the role and responsibilities of witnesses in the consent process, their training requirements and whether a universal legal requirement for witnessed consent, regardless of the type of research, is desirable. (shrink)

What makes individuals, groups, or even entire countries vulnerable? And why is vulnerability a concern in bioethics? A simple answer to both questions is that vulnerable individuals and groups are subject to exploitation, and exploitation is morally wrong. This analysis is limited to two areas. First is the context of multinational research, in which vulnerable people can be exploited even if they are not harmed, and harmed even if they are not exploited. Second is the situation of women, who are (...) made vulnerable in cultural settings or in entire countries in which they are oppressed and powerless. (edited). (shrink)

The so-called European principles of bioethicsare a welcome enrichment of principlistbioethics. Nevertheless, vulnerability, dignityand integrity can perhaps be moreaccurately understood as anthropologicaldescriptions of the human condition. Theymay inspire a normative language, but they donot contain it primarily lest a naturalisticfallacy be committed. These anthropologicalfeatures strongly suggest the need todevelop deontic arguments in support of theprotection such essential attributes ofhumanity require. Protection is to beuniversalized, since all human beings sharevulnerability, integrity and dignity, thusfundamenting a mandate requiring justice andrespect for fundamental human (...) rights.Being a feature of all humanity, vulnerabilityis improperly extended to designatedestitute individuals and populations. Rather,they are in a state of fallen vulnerability,for they already are harmed in some way, andhave become deprived of their range ofcapabilities. These individuals are destituteand are no longer in command of theirfundamental human rights. They have lost thestatus of unharmed vulnerability;identifying them as susceptible – vulnerated andno longer only vulnerable – stresses thepoint that bioethics demands specific socialaction to palliate or remove their distress.When harm does occur – in the form of disease,for example –, individuals are no longervulnerable – for they have ceased to be intact–, they become susceptible to additionaldeprivations and sickness; integrity isdemeaned and dignity is offended, leading tostates of dysfunction that require specificremedial social practices, aimed at treatingand removing injuries.The main point this paper addresses is thatvulnerability – as well as dignity and integrity – are descriptive characteristics ofhuman beings qua humans, which are not normative in themselves, but fundamental enoughto inspire bioethical requirements of protection and respect for human rights in thewake of social justice. A clear distinction must be made in regard to human beings who areinjured by poverty, sickness, discriminating deprivations or suffer otherdestitutions, having ceased to be only vulnerable for they are no longer intact. Theseindividuals and populations require more than protection, their needs must be met byspecific care and remedial measures to be identified and instigated by bioethics quaapplied ethics. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may (...) be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

The acceleration of the market globalisation process over the last three decades has internationalised clinical research and influenced both the way in which it is funded and the development and application of research practices. In addition, in recent years international multicentre randomised clinical trials have become the model par excellence for research on new medicines. The neoliberal model of globalisation has induced a decline in state power, both with regard to establishing national research for health priorities and to influencing the (...) development of adequate ethical guidelines to protect human beings that participate in multinational research. In this respect, poor and low-income countries, which lack sustainable control and review systems to deal with the ethical and methodological challenges of complex studies conducted by researchers from affluent countries and funded by large multinational pharmaceutical companies, are particularly vulnerable. The aim of the present paper is to explore critically some of the actual and possible ethical pitfalls of globalisation of clinical research and propose mechanisms for turning transnational clinical research into a more cooperative and fairer enterprise. (shrink)