Patient Advocacy and Activism

The critiques of medical experimentation articulated in the 1970s were not new, but they were being expressed with considerable vigor. Efforts to protect human research subjects were part of a larger social movement that reflected a shift in the medical balance of power. Many have called AIDS activism unique—and certainly in some ways it has been unprecedented—but it can be understood in the context of changes in medical relationships and authority that have characterized American medicine since the late 1960s (Jonsen, 1991; Rothman, 1991).

Although there is no adequate history of the patient-doctor relationship, it is widely recognized that fundamental cultural changes in the nature of this relationship have occurred since the mid-1960s. Since that time, there have been several changes that reflect, if not characterize, a shift away from "medical paternalism": a growing skepticism by patients of medical and scientific authority; a deeper commitment to disclosure and consent by physicians; the legal codification of informed consent, as well as clearer promulgation of patients' "rights"; and the establishment of institutional mechanisms, such as internal review boards to protect human subjects. All these developments reflected significant change in the general practice of medicine and the nature of clinical investigation (Katz, 1984; Faden and Beauchamp, 1986).

The rise of AIDS activism can be understood only in the context of the critical shifts in the medical culture just noted and the gay rights movement of the 1970s and 1980s (D'Emilio, 1983). The development of organized activist groups provided an institutional vehicle for articulating critiques of traditional research approaches and federal regulatory mechanisms (see Chapter 6). Those critiques reflected the powerful conflicts in values and priorities revealed by the epidemic, as well as a more general erosion of medical and scientific authority. This social process, as noted, was already under way before the onset of the epidemic; the sacrosanct world of scientific and medical investigation had been opened to public scrutiny, regulation, and criticism. Research, in this new context, would fundamentally require active participation and negotiation between researchers and subjects.

The AIDS epidemic would severely strain virtually every assumption of what had come—over a 20-year period—to be the guiding, orthodox assumptions regarding clinical research and the regulation of new drugs. Every aspect of the process by which new pharmacologic agents were identified, evaluated, regulated, and allocated would be tested by the exigencies of epidemic disease. Questions basic to the epistemologic foundations of biomedicine—questions of verifiability, reproductibility, proof, variability, safety, and efficacy—would all be subject to debate and reevaluation. In



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