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People with AIDS as activists: redefining the role of the patient.
Powers T; Glass JE; AIDS Coalition to Unleash Power, New York, NY, USA
December 30, 1990
Int Conf AIDS. 1990 Jun 20-23;6(2):469 (abstract no. 4062). Unique

OBJECTIVE: To examine the emerging conflicts and new ethical questions which are being raised by the PWA (People with AIDS) activist movement. METHODS: We offer an analysis of AIDS activism in the United States over the past three years, interviews with PWA activists, a critical examination of the relevant demands and printed materials which this movement has put forth, and a discussion of conflicting viewpoints within the movement on the issues of patients' rights and personal autonomy. RESULTS: There is a widely held belief that PWA's are involved in AIDS activism because they believe the pace of scientific progress to be sluggish. While this might have been true at the onset, the demands of PWA activists are taking on the character of a civil rights struggle (i.e. the right to self-representation, a guaranteed amount of input and decision-making power in the governmental bodies which hold authority over their lives, such as the U.S. Food and Drug Administration and the National Institutes of Health.) CONCLUSION: In order to minimize conflicts between patients and researchers/doctors, it is necessary to craft a new structural framework for the ethical analysis of treatment and research issues which recognizes a sharing of decision-making power with the communities of people living with the disease.

*Acquired Immunodeficiency Syndrome Ethics Human *Patient Advocacy/TRENDS United States ABSTRACT