Book review.
VIRUSMYTH HOMEPAGE


BOOKSHELF


Steven Epstein, 'Impure Science; AIDS, activism, and the politics of knowledge' University of California Press USA 1996, 466 pages, ISBN 0-520-20233-3.


BOOK REVIEW (NEW ENGLAND JOURNAL OF MEDICINE)

Important events command our attention, and complex issues require careful analysis. In both respects, the AIDS epidemic is a durable subject for investigation. Popular books have considered the social history of the epidemic, and many have addressed the scientific and medical aspects of AIDS. In contrast, there are few scholarly analyses of the sociological aspects of AIDS. This will not be true for long, because the behavior of the virus, the people most affected by it, and the politics of the social response to AIDS provide fertile ground for social scientists.

In Impure Science: AIDS, Activism, and the Politics of Knowledge, Steven Epstein gives the reader a strong sense of how important social science will prove to be in our understanding of AIDS. Most readers, whether or not they are involved in research on HIV, will learn a great deal from Epstein's study. And, despite its academic framework, the book is so well written that reading it is enjoyable.

The basis of Impure Science is Epstein's highly praised sociology thesis. As one might thus expect, the author is specific in defining his objectives and methods. His primary concern is the process by which science gains credibility, particularly against the background of an increasingly skeptical public. Epstein investigated two facets of the history of AIDS: Peter Duesberg's controversial challenge of the primacy of HIV as the cause of AIDS, and the attack on the process of drug development and approval by AIDS activists. In both areas, Epstein considers the interplay between scientific "outsiders" and "insiders," the process by which credibility is gained or lost, and the risk of dogmatism and premature closure of the debate.

In the case of Peter Duesberg, Epstein reviews the rapid acceptance of HIV as the cause of AIDS, despite gaps in our understanding of its pathogenesis. Duesberg's credibility, notwithstanding a solid academic career, is seen as limited by his lack of hands-on experience in HIV research and his distance from the communities of people with the infection. Not being a member of these communities and expressing views that fall outside the scientific mainstream, he commands a limited audience and has only a slight influence on the field. Epstein's analysis could not include Duesberg's reaction to the current success (dramatic at times) of anti-HIV therapy.

The AIDS activists, in contrast, began with only their moral credibility. Who, after all, could attack someone actually facing death from AIDS? Thus armed, the activists overcame their lack of scientific credibility. In fact, they gained it by their persistent, direct involvement in the processes of clinical-trials design and drug approval.

Impure Science raises issues that extend well beyond the HIV epidemic. Increasingly, science and medicine proceed against the backdrop of a skeptical, hostile, or indifferent public. The use of alternative treatments continues to increase, and the less attractive side of research -- the greed and sometimes corrupted scientific process -- is a subject for journalists. The field of AIDS research has had its share of exposes. Whether or not the accounts are true, the harm of these assaults is real. Many HIV-infected patients are skeptical of scientific and medical claims. Blacks remember the Tuskegee experiment, and gay men remember that until only recently, their orientation itself was called a disease. Little wonder, then, that "outside" views have a wide audience and many patients limit their acceptance of HIV testing and conventional therapy.

The issues Epstein addresses are only part of our history. The dogmatism of powerful "credible" scientists who prematurely decide on the answers to research questions is another problem. For example, the conclusion that complete and permanent suppression of HIV replication will be routinely possible discourages attempts to investigate the truth of this assumption.

In Impure Science, Epstein successfully avoids taking sides, although his personal respect for Duesberg seems evident. He is willing to point out the weaknesses of prior accounts of the epidemic, including the popular work of Randy Shilts. Epstein accurately identifies the increasing conservatism of some activist groups and does not claim that truth is a meaningful concept in his type of investigation. His skepticism about the support extended to activists by scientists, including investigators who initially were most resistant to this "intrusion" in the research process, is perceptive.

Impure Science is a serious work in the sociology of science and medicine. Many will find reading it challenging, but it is an important, timely, and well-written book.


Review by: Paul A. Volberding, M.D. San Francisco General Hospital
Source: New England Journal of Medicine 22 May 1997


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