Problems posed by HIV/AIDS differ from those ofpast epidemics by virtue of unique propertiesof the causative agent, dramatic societalchanges of the late 20th century, and thetransition of medical practice from aprofessional ethic to a technology-dependentbusiness ethic. HIV/AIDS struck during thecoming-of-age of molecular biology and also ofbioethics, and the epidemic stimulated thegrowth of both disciplines. The number ofarticles published about AIDS and ethics (asidentified by a MEDLINE search) peaked in 1990,just before the peak incidence of AIDS in theUnited States. The character (...) of ethicaldialogue has now shifted from familiar moralquandaries such as civil liberty versus publicwelfare to concerns about vaccine trials andpublic policy toward the developing world.Physicians and other health care workers whowere involved from the onset endured somethingof an emotional roller coaster. Theircompassion-based work ethic was to a largeextent replaced by a competence-based workethic after the introduction in 1996 of highlyactive antiretroviral therapy. The abundantrecent literature on ``professionalism'' inmedicine makes scant mention of AIDS/HIV. Thedisruptive effect of AIDS/HIV on society wouldhave been substantially greater had relevanttechnology such as the ability to isolateretroviruses and potent therapy againsttuberculosis not been in place. This soberingconsideration, along with such recent events asthe use of bioterrorism against civilianpopulations, suggests new relevance forPotter's definition of ``bioethics'' as a scienceof survival in which the biology of ecosystemsmust be taken into account. (shrink)

The purpose of this article is to describe and reflect ethical challenges in a grounded theory study on the dynamics of hope in HIV-positive adults and their significant others. It concentrates on the justification of a research problem, sensitive research and the relationship between the researcher and the participants in data collection. The basis of ethically sound nursing research on the dynamics of hope in these two vulnerable groups lies in the relationship between the researcher and the participant. However, it (...) is also obvious that the content, the process, the methods used and the ethics of the study cannot be divorced from this relationship. In conducting grounded theory research on the dynamics of hope in this research population, the researcher has to consider the surrounding world, that is, the reality in which these people live in hope or despair. (shrink)

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. (shrink)

The hysteria and misconceptions about AIDS which are fostered and held by the popular press have been accepted uncritically by many bioethicists, who have not bothered to explore popular empirical claims in sufficient depth. As a result, and because ethicists attempt tosell moral problems in a manner not much different from the way the popular press attempt tosell newspapers, artificial dilemmas have been produced in professional journals. We concentrate on just one popular misconception about AIDS-that the hetersexual incidence of the (...) syndrome is widespread-and showhow bioethicists' unreflective acceptance of this myth has led them to make conceptual and practical errors. (shrink)