Udo Schüklenk

Reading the exchange between Halpin, Savulescu, Talbot, Turner and Talman reminds one starkly and uncomfortably of the issues AIDS activists faced in the 1980s and 1990s.1 Some of the trial designs in those days were sufficiently bad that patients could not be recruited in the numbers required to run them, the sacrifices they demanded from patients in terms of their very survival were simply too extreme.2 Anthony Fauci, at the time director of the US National Institute of Allergy and Infectious Diseases (NIAID), reportedly conceded that “the randomised clinical trial routinely asks physicians to sacrifice the interests of their particular patients for the sake of the study.”3 Mainstream bioethicists defended the coercive offers that were extended at the time to patients by the research establishment, pretending that the choice of joining a placebo-controlled trial with an experimental agent or having no chance to access an experimental agent were reasonable options in a reality absent of any gold standard of medical care.4 John Arras, for instance, argued that “[b]y entering a protocol, subjects enter into a moral …

In few other areas of bioethical inquiry exists as close a connection between bioethical professional advice and policy development as is the case with HIV and AIDS. Historically, the reasons for this have much to do with one of the groups initially affected most severely by HIV and AIDS, namely well-educated middle-class gay men in developed countries. This particular group of people, highly sophisticated and used to political activism in its pursuit of civil rights-related objectives, engaged the medical profession as well as regulatory agencies such as the US Food and Drug Administration, and legislators (more so in the USA than in other countries) in a number of bioethically interesting policy areas. Many of the controversies of the times were framed as civil rights and/or ethical disputes. The initial areas of concern and inquiry focused on: informed consent to HIV testing and trial participation, the confidentiality of HIV test results, access to trials as a means of access to experimental drugs, the length of time it took to get an experimental drug to the market approval stage, and end-of-life decision-making. This line-up of issues explains why AIDS has become such an interesting topic for bioethicists. Bioethicists concerned about the traditional breadand- butter themes of medical ethics themes of the doctor - patient relationship (e.g., Daniels, 1991; Boyd, 1992), as well as bioethicists more concerned about policy and regulatory issues in the drug research and approval process (e.g., Edgar & Rothman, 1990; Salisbury & Schechter, 1990), found research topics worthy of vigorous pursuit. No surprise, then, that HIV/AIDS led to a probably unprecedented number of books and articles in professional journals (Manuel et al., 1990). HIV/AIDS has become a permanent fixture in all major mainstream bioethics textbooks (e.g., Kuhse & Singer, 1998; Arras & Steinbock, 1999). Reference series in medicine, ethics and law provide for dedicated volumes on AIDS.1 Even specialist bioethics textbooks, for instance those directed at dentistry students, carry chapters on HIV/AIDS (Ozar & Sokol, 2002). 128 Udo Schuklenk AIDS, designated by the medical profession a pandemic lives up to its classification. It did not stop at the borders of developed countries. As one would expect of a primarily sexually transmitted illness in the age of globalisation, it spread rapidly across the globe. Indeed, in many countries it has become one of the main causes of death, as in sub- Saharan Africa (Shisana & Simbayi, 2002). Dramatic increases in the number of AIDS cases are predicted for many Eastern European countries as well as for the two most populous nations on earth, India and China. Some of the HIV/AIDS-related bioethical and policy issues of concern to developed countries remain the same for developing countries. However, in ethically important ways they are dwarfed by concerns over drug prices, intellectual property rights, and affordable access to essential AIDS drugs for the impoverished masses of infected people in such countries. Of increasing importance have become ethical issues pertaining to the ever-growing research industry associated with clinical trials undertaken in developing countries. Indeed, major funding initiatives both in the USA and UK have brought clinical research in developing countries into focus. Some have questioned whether this attention is appropriate, considering other bioethical problems of arguably greater importance to developing countries (Chadwick & Schuklenk, 2003). Standards of clinical care in a study, and after a trial has concluded, as well as community benefits and access to the trial regime after the trial’s conclusion remain contentious issues. It is worth noting that more often than not it was an AIDS-related trial or policy decision that led to a great deal of bioethical analysis, yet the issues discussed almost always have ramifications far beyond AIDS. For instance, decisions about the question of what (if any) standards of care failures in preventive trials (of HIV vaccines or microbicides) ought to receive have important implications for non-AIDS prevention trials

Some jurisdictions that have decriminalized assisted dying exclude psychiatric patients on the grounds that their condition cannot be determined to be irremediable, that they are vulnerable and in need of protection, or that they cannot be determined to be competent. We review each of these claims and find that none have been sufficiently well-supported to justify the differential treatment psychiatric patients experience with respect to assisted dying. We find bans on psychiatric patients’ access to this service amount to arbitrary discrimination. Proponents of banning the practice ignore or overlook alternatives to their proposal, like an assisted dying regime with additional safeguards. Some authors have further criticized assisted dying for psychiatric patients by highlighting allegedly problematic practices in those countries which allow it. We address recent evidence from the Netherlands, showing that these problems are either misrepresented or have straightforward solutions. Even if one finds such evidence troubling despite our analysis, other jurisdictions need not adopt every feature of the Dutch system.

This paper examines two strategies aimed at demonstrating that moral obligations to improve global health exist. The ‘humanitarian model’ stresses that all human beings, regardless of affluence or global location, are fundamentally the same in terms of moral status. This model argues that affluent global citizens’ moral obligations to assist less fortunate ones follow from the desirability of reducing disease and suffering in the world. The ‘political model’ stresses that the lives of the world's rich and poor are inextricably linked because of harmful state-to-state actions and because of the currently existing transnational institutions. These institutions’ design at once secures the high standard of living of the affluent and reinforces the continued foreseeable—and avoidable—deprivation of many of the global poor; and these give rise to compensatory health-related moral obligations beyond borders. This paper argues that political reasoning is unsuitable for the crucial task of determining priority in the receipt of health aid. We conclude that in the context of global health ethics, political reasoning must be supplemented with, if not replaced by, humanitarian reasoning

ABSTRACTNon‐governmental aid programs are an important source of health care for many people in the developing world. Despite the central role non‐governmental organizations play in the delivery of these vital services, for the most part they either lack formal systems of accountability to their recipients altogether, or have only very weak requirements in this regard. This is because most NGOs are both self‐mandating and self‐regulating. What is needed in terms of accountability is some means by which all the relevant stakeholders can have their interests represented and considered. An ideally accountable decision‐making process for NGOs should identify acceptable justifications and rule out unacceptable ones. Thus, the point of this paper is to evaluate three prominent types of justification given for decisions taken at the Dutch headquarters of Médecins sans Frontières. They are: population health justifications, mandate‐based justifications and advocacy‐based justifications. The central question at issue is whether these justifications are sufficiently robust to answer the concerns and objections that various stakeholders may have. I am particularly concerned with the legitimacy these justifications have in the eyes of project beneficiaries. I argue that special responsibilities to certain communities can arise out of long‐term engagement with them, but that this type of priority needs to be constrained such that it does not exclude other potential beneficiaries to an undesirable extent. Finally, I suggest several new institutional mechanisms that would enhance the overall equity of decisions and so would ultimately contribute to the legitimacy of the organization as a whole

Now fully revised and updated, Bioethics: An Anthology, 3rd edition, contains a wealth of new material reflecting the latest developments. This definitive text brings together writings on an unparalleled range of key ethical issues, compellingly presented by internationally renowned scholars. The latest edition of this definitive one-volume collection, now updated to reflect the latest developments in the field Includes several new additions, including important historical readings and new contemporary material published since the release of the last edition in 2006 Thematically organized around an unparalleled range of issues, including discussion of the moral status of embryos and fetuses, new genetics, neuroethics, life and death, resource allocation, organ donations, public health, AIDS, human and animal experimentation, genetic screening, and issues facing nurses Subjects are clearly and captivatingly discussed by globally distinguished bioethicists A detailed index allows the reader to find terms and topics not listed in the titles of the essays themselves.