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)

Although the map of technology ethics is expanding, the growing subdomains within it may raise misgivings. In a recent and very interesting article, Sætra and Danaher have argued that the current dynamic of sub-specialization is harmful to the ethics of technology. In this commentary, we offer three reasons to diminish their concern about ethical proliferation. We argue first that the problem of demarcation is weakened if we attend to other sub-disciplines of technology ethics not mentioned by these authors. We claim (...) secondly that the logic of sub-specializations is less problematic if one does adopt mixed models (combining internalist and externalist approaches) in applied ethics. We finally reject that clarity and distinction are necessary conditions for defining sub-fields within ethics of technology, defending the porosity and constructive nature of ethical disciplines. (shrink)

Providing versus foregoing enteral nutrition is a central issue in end-of-life care, affecting patients, families, nurses, and other health professionals. The aim of this article is to examine Jewish ethical perspectives on nourishing the dying and to analyze their implications for nursing practice, education, and research. Jewish ethics is based on religious law, called Halacha. Many Halachic scholars perceive withholding nourishment in end of life, even enterally, as hastening death. This reflects the divide they perceive between allowing a fatal disease (...) to naturally run its course until an individual’s vitality (life force or viability) is lost versus withholding nourishment for the vitality that still remains. The latter they maintain introduces a new cause of death. Nevertheless, coercing an individual to accept enteral nourishment is generally considered undignified and counterproductive. A minority of Halachic scholars classify withholding enteral nutrition as refraining from prolonging life, permitted under certain circumstances, especially in situations where nutritional problems flow directly from a fatal pathology. In the very final stages of dying, moreover, there is a general consensus that enteral nourishment may be withheld, providing that this reflects the dying individuals’ wishes. In the event of enteral nourishment becoming a source of overwhelming discomfort, two Halachic ethical mandates would come into conflict: sustaining life by providing nourishment and alleviating suffering. As in all moral conflicts, these would have to be resolved in practice. This article presents the issue of enteral nourishment as it unfolds in Halacha in comparison to secular and other religious perspectives. It is meant to serve as a foundation for nurses to reflect on their own practice and to explore the implications for nursing practice, education, and research. In a world that remains broadly religious, it is important to sensitize health practitioners to the similarities and differences among religions and between secular and religious approaches to ethical issues. (shrink)

Often advocates for persons with disabilities strongly object to the claim that disability essentially involves a decrement in health. Yet, it is a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told that, their impairment is at bottom a health problem. In this paper, I investigate the conceptual linkages between health and disability, relying on robust conceptualizations of both notions, and conclude it makes no conceptual sense to insist that a person can be seriously impaired (...) yet still be, or become, “perfectly healthy.” But that cannot be the end of it since this kind of error is commonly made, and I try to tease out the reason why not only disability advocates but agencies like the WHO and the CDC fall victim to it. I conclude by conceding that there are indeed sound political reasons for being cautious about the alignment of disability and ill-health, but suggest that the price we pay in conceptual confusion may be too high to allow those reasons to dictate policy. (shrink)

Often advocates for persons with disabilities are resistant to what might appear to be the banal truism that, at bottom, disability is a decrement in health. Disability advocates have long objected to the “medicalization” of disability, when that means focusing entirely on a person’s underlying impairments and ignoring all of the manifold obstacles in his or her environment — e.g., physical, human-built, attitudinal, social, political, and cultural — that makes living with those impairments at least disadvantageous and socially devalued. Over-medicalization (...) is another and well understood problem that people with disabilities are justifiably concerned about. Yet it is somewhat of a mystery why anyone with an impairment would ever deny, or feel uncomfortable being told, that their impairment is a health problem. Surely, people with disabilities are unhealthy, by virtue of their impairments and to the degree according to the severity of those impairments. How could it be otherwise? (shrink)