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In the short, turbulent history of AIDS research and treatment, the boundaries between scientist insiders and lay outsiders have been crisscrossed to a degree never before seen in medical history. Steven Epstein's astute and readable investigation focuses on the critical question of "how certainty is constructed or deconstructed," leading us through the views of medical researchers, activists, policy makers, and others to discover how knowledge about AIDS emerges out of what he calls "credibility struggles."
Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.
Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.
- Sales Rank: #558873 in Books
- Published on: 1996-01-01
- Original language: English
- Number of items: 1
- Dimensions: 9.00" h x 1.00" w x 6.00" l, 1.43 pounds
- Binding: Paperback
- 480 pages
From Library Journal
Epstein (sociology, Univ. of California, San Diego) provides an exhaustive analysis of how credibility is established within the field of science. He shows how a group of laypersons gained credibility within the system and what effects their "lay expertise" had on the scientific process, in particular, the effort to treat AIDS. In the first section, he discusses the origin of AIDS, showing how HIV came to be accepted as the cause of AIDS and how that theory was challenged by some renowned scientists. In the second section, Epstein offers a particularly fascinating examination of the development of "expertise" among AIDS treatment activists, who eventually played a significant role in changing the methodology of clinical drug trials. This volume, based on the author's award-winning dissertation, is highly recommended for academic and health science collections of public libraries.?Tina Neville, Univ. of South Florida at St. Petersburg Lib.
Copyright 1996 Reed Business Information, Inc.
From Booklist
A well-trained physician can diagnose AIDS as a disease, but sociologist Epstein does more. He diagnoses AIDS as a political and cultural event requiring us to rethink the place of medical science within society. He shows that since its deadly appearance in the 1980s, AIDS has let loose forces subversive to the status quo. Because it has claimed so many homosexual victims, AIDS has galvanized gay activists determined to overcome the indifference and even hostility of the medical and research bureaucracy. Many others--including hemophiliacs and women's groups--have joined in the fight for a place in the professional councils discussing what causes AIDS, what available treatments should be researched, and what possible cures should be researched. These debates have made medicine and research more democratic than ever before. But they have also forced activists, public officials, and doctors to confront vexing questions about the limits of politics and the prerogatives of expertise. Nowhere else will readers find a more carefully documented chronicle of how AIDS has brought these questions to the fore. Bryce Christensen
Review
"Important, timely, and well written."--Paul Volberding, "New England Journal of Medicine
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0 of 4 people found the following review helpful.
good condition
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I was very happy with the price and the transaction was easy.The book had all pages intact and had no markings.
6 of 7 people found the following review helpful.
ethnography of activism during the HIV/AIDS pandemic
By Jean Holland
This book is a must-read for anyone working on infectious disease pandemics. But it is also an important read for activists who are beginning to understand the workings of complex adaptive systems. The author does a wonderful job of gathering information from the many fronts on which activists, scientists, docs, government regulators, and the infected frantically worked in the United States to stem the rising tide of death from AIDS.
From the point at which the sentinal systems were picking up the emergence of this new disease, to the race against the clock for treatments and scientific understanding, the book covers the many policy and practical arenas in which people fought for themselves and their loved ones to beat death from this virulent, frightening infectious agent. It talks about scientific authority and de-mystifies the scientific enterprise while wondering whether this reduces the authority of science...but does not propose a solution to this dilemma. A terrific ethnography for students and for social activists of a time of great emergency, it is sure to stimulate much discussion. Sincere, careful, respectful of all players in this drama, the book teaches us about the social interactions required to handle such horrible emergencies.
Someone needs to look the same way at the AIDS syndemic in Africa. It is too bad that the folks who were looking at healthcare reform did not have this author's insightful study to help them get us ready for the next pandemic. Because, have no doubt, there WILL be one.
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