Society's Choices Social and Ethical Decision Making in Biomedicine (1995) / Chapter Skim
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AIDS, Ethics, and Activism: Institutional Encounters in the Epidemic's First Decade
AIDS, Ethics, and Activism: Institutional Encounters in the Epidemic's First Decade
Pages 458-476
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From page 458... ...
Among the issues that have drawn attention are: the duty of physicians to care for those who are in need, the limits and significance of medical confidentiality,2 the obligation to seek informed consent before testing and commencing treatment,3 the functions of counseling infected individuals about their duties to partners4 and of assisting women who are infected as they are compelled to make reproductive decisions,5 the clash between the canons of research and the canons of care,6 the limits of acceptable underwriting by insurance companies,7 and, finally, the rights of individuals with costly medical conditions to emigrate.8 Despite the extraordinary context of the epidemic during the past decade, what is striking about the issues that have been pressed to the fore is that they are not new. They are subjects that have drawn the attention of ethicists and humanists over the past two decades as they have considered the role of medicine in society.
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From page 459... ...
The conflict arose early as the Centers for Disease Control sought the names of AIDS patients reported to public health authorities throughout the country. Recognizing the critical importance of longitudinal studies to a broad research program, gay leaders were nevertheless fearful that providing federal health officials with such data would *
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From page 460... ...
Can we trust you enough? ''l0 The dilemma posed for gay leaders was pinpointed by Jeff Levi of the Nanona1 Gay Task Force: "We could not be more interested in the gathering of accurate info~at~on about AIDS, but we also firmly believe that reporting mechanisms must guarantee confideni~ali~."~ While some believed that no tension existed between the imposition of ironclad protections and the conduct of epidemiological research, others felt it imperative to note that, while it was possible to strike a compromise position, all such efforts involved tradeoffs in the speed and ease with which data could be gathered and subjected to analysis.
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From page 461... ...
In addition to experts on the ethics and law of human subjects research, public health representatives, and specialists on civil liberties, the group created to examine the question of confidentiality and research included representatives of the gay community. A physician who was among the first to seek a cure for those with AIDS, a patient of his who had early emerged as a spokesperson for people with AIDS, representatives from the Lambda Legal Defense and Education Fund, and the National Gay Task Force were all involved.
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From page 462... ...
The guidelines, broadly agreed to by the group and endorsed by much larger constituencies of experts on ethics as well as by representatives of the gay community, were published at the end of 1984. Any investigation involving a possibly communicable disease poses a tension between an individual's desire to control personal information and the desire of others to have access to that information.
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From page 463... ...
Although never acted upon, this recommendation reflected the emerging commitment to a broad consultative model, which would include representatives of the communities most at risk for AIDS, for conducting work on the ethical issues posed by the AIDS epidemic. It was this model of collaboration that was to inform the next major undertaking of the Hastings Center as it confronted the question of the tension between public health and civil liberties in the context of the AIDS epidemic.
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From page 464... ...
No marginal advance of the public health, those who argued against wide-scale testing asserted, could warrant such a catastrophic array of personal burdens. "Don't take the test" became the rallying cry of the leaders of the gay community.
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From page 465... ...
When properly used, test information may also enhance the education efforts which remain for now the principal intervention to prevent HTLVIII transmission." But an increased reliance on voluntary testing was predicated on the capacity to protect the confidentiality of test results. Acknowledging the skepticism of the gay community indeed, at least one representative of the gay community was involved in the process of drafting the ASTHO report the document stressed the importance of convincing those at risk that all measures would be taken to preclude the unwarranted disclosure of test findings."~7 The defense of confidentiality was not antithetical to the protection of public health; it provided the condition for the required interventions.
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From page 466... ...
Relying on the principles first enunciated in The Belmont Report, as well as on constitutional principles, limiting the exercise of state power in the name of the public health and welfare, it was possible for the directors of the Hastings project to provide a clear enunciation of the case for voluntary HIV testing. More specifically the guidelines, published in the journal of the American Medical Association, provided a response to the concerns voiced by gay leaders.
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From page 467... ...
Described by its chair, Dr. Ruth Faden, as a "self-appointed group," it included a range of experts in public health, law, ethics, and policy drawn from the Hopkins community, the Georgetown Law Center, and the Kennedy Institute of Ethics.~9 Funded by the American Foundation for AIDS Research, the group undertook, through a series of meetings in the late 1980s, an examination of a range of complex screening issues involving women and newborns.
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From page 468... ...
There had been challenges to federal protections in the past, for example, when prisoners at Jackson State Prison in Michigan demanded that they be permitted to serve as research subjects because parucipanon provided them with social advantages. But the HIV epidemic has provided the circumstances for the emergence of a broad and potent political movement that has sought to reshape radically the conditions under which research is undertaken.
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From page 469... ...
As Carol Levine has noted, "the shortage of proven therapeutic alternatives for AIDS and the belief that trials are, in and of themselves, beneficial have led to the claim that people have a right to be research subjects. This is the exact opposite of the tradition started with Nuremberg that people have a right not to be research subjects."22 That striking reversal has resulted in a rejection of the model of research conducted at remote academic centers, with restrictive (protective)
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From page 470... ...
For the American Foundation for AIDS Research (AmFAR) , which had been instrumental in funding virtually every effort on AIDS and ethics, the debate over drug trials was of central importance.
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From page 471... ...
When finally published in IRE: A Review of Human Subjects Research in 1991, the report, "Building a New Consensus: Ethical Principles and Policies for Clinical Research on HIV/AIDS," reflected agreement on the need to replace the overly protective and paternalistic ethos that had informed the regulation of research and to open wide access to therapeutic trials to those who had previously been excluded or who had faced severe restrictions—women, prisoners, drug users, members of minority groups. Reflecting the political demands of AIDS activists, the consensus not only stressed the critical importance of community consultation but argued that such consultation should not be viewed as a way to obtain acceptance of an already agreed-upon protocol; the task of shaping the protocol itself "must be a partnership." Thus did the process of arriving at a consensus on research through the joint efforts of ethicists and activists produce a recommendation for partnership in the enterprise of investigating new drugs.
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From page 472... ...
Fueled by a rise in poverty, homelessness, untreated drug addiction, and the crowding of prisons, this stark shift was fundamentally linked to the HIV epidemic. Those who are dually infected with HIV and microbacterium tuberculosis are at sharply increased risk for developing tuberculosis disease.
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From page 473... ...
long associated with work on the AIDS epidemic to constitute a working group under the auspices of the United Hospital Fund in New York City, with additional funding by AmFAR. Emboldened by the experience of past working groups that had successfully achieved broad consensus on critical policy issues posed by the HIV epidemic, the three project directors constituted a panel that was built on the model of the first Hastings Center working group on AIDS.
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From page 474... ...
Given the social costs of noncompliance, the expenditure of resources on mandated directly observed therapy, at least during the initial phase of treatment, clearly would represent a cost-e~eciive approach to tuberculosis control.30 CONCLUSIONS As ethicists have sought to make an impact on the shaping of public health policy in the context of the AIDS epidemic an undertaking that has perforce required an extension of the principles first developed in the context of the challenges posed by the clinical encounter- they have tended to develop positions most compatible with the political perspectives of those most at risk. In part the ideological content of the work of ethicists during the first decade of the AIDS epidemic reflected their own political identification as American liberals; in part it reflected the extension of the concern for the subordinate party in the clinical encounter that so shaped the development of medical ethics since the late 1960s.
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From page 475... ...
1986. HIV antibody screening: An ethical framework for evaluating proposed programs.
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From page 476... ...
16. Association of State and Territorial Health Officials, ASTHO Guide to Public Health Practice: HTLVIIIAntibody Testing and Community Approaches.
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