Impure Science: AIDS, Activism, and the Politics of Knowledge (Volume 7)

by Steven Epstein

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.

Genres: Nonfiction, Science, History, Sociology, Politics, Health, Medicine

480 pages, Hardcover

First published January 1, 1996

Reviews

[Kathleen · Rating 5 out of 5]

It took me a while to get through this, but I'm glad I stuck with it. Epstein explains how HIV/AIDS prompted a sort of democratization of drug research—how input from would-be drug recipients and AIDS activists helped change the way science was being done.

[Sharad Pandian · Rating 5 out of 5]

"This book is a study of how varied classes of AIDS experts, diverse conceptions of scientific practice, and distinct claims of knowledge about AIDS have all been generated out of relationships of conflict and cooperation in the United States since the early 1980s. Inside a large and often floodlit arena with a diffuse and porous perimeter, an eclectic assortment of actors has sought to assert and assess credible knowledge about AIDS: biomedical researchers and health care professionals of different stripes; activists, advocacy groups, and people with AIDS or HIV infection; health educators and social scientists; politicians and public health officials; government agencies and advisory committees; pharmaceutical and biotechnology companies; writers, journalists, and the institutions of the mainstream and alternative media. “What we know about AIDS” is the product of this elaborate, often heated, and in some ways quite peculiar complex of interactions." (2)

"The immediate goal of my analysis is to shed light on the scientific and political dynamics of a health crisis of immense social import. With so many lives at stake, it behooves us to understand the configuration of interests, beliefs, and practices that determine how we come to believe what we think we know about the epidemic. However, I intend this analysis to do more. By emphasizing the role of laypeople in the production of biomedical knowledge, this study challenges approaches to the social study of science that tend to assume that knowledge-making is the province of a narrow circle of credentialed experts. And by exploring the vicissitudes of lay interventions in AIDS research, particularly on the part of grassroots activists, this study addresses some important and intractable questions about the politics of expertise and the place of science in the larger culture: What is the nature of the power wielded by experts? How does a society reconcile competing commitments to scientific autonomy and participatory democracy? What possibilities are there for laypeople to involve themselves meaningfully in the processes of “doing science,” and what are the consequences of such incursions?" (4)

[Alex Betsos · Rating 5 out of 5]

Epstein's "Impure Science", is a classic in Sociology of Science and Science and Technology Studies, particularly around the question of lay vs expert, and what constitutes expertise. Epstein follows the controversy around HIV/AIDS from its inception in the early 1980s through to 1995. Ever wondered about how ACT-UP shifted both social movements, and science itself? Then this book is for you!

Particularly relevant for understanding COVID-19 and the making of knowledge, I can't think of a reason not to read this book. Unlike COVID deniers, AIDS activists both had a foot in the activist space and within in normative science. What does "good" science look like? Do control groups make sense in times of crisis? Do pure notions of clinical trials make sense in a time of complexity? These are unanswerable, and I don't think Steven Epstein ever tries; ultimately because these are hard questions, and ultimately, the real answer is likely, "it depends".

This book has a little bit of everything. It's got controversy around what constitutes expertise, how science & politics intersect and who qualifies as an expert, even amongst different scientific communities. It is also a really accessible read, even when the concepts it discusses are themselves very complicated.

[Ted Gideonse · Rating 4 out of 5]

A deeply researched and analyzed description of the early scientific debates about what would be called HIV and the early AIDS meds, especially AZT, it's a little "inside baseball" for the general reader, and like most sociology, it ignores a great deal of psychology and emotion (or dismisses it). But for what it is, it's fantastic.

[Yutong Cai · Rating 4 out of 5]

Highly recommend reading the Introduction on Crisis of Credibility chapters.

This works presents in-depth research on what constitutes expertise in the context of AIDS, bringing awareness on how social movements influence the practice of science. Few chapters are too descriptive rather than argumentative, but overall worthy of reading.

[Sal · Rating 3 out of 5]

It's a well-researched account of the emergence and organization of the AIDS movement. It's very easy to see how AIDS activists changed the nature of activism. That said, the text is not exactly light reading, and though I initially was interested, I became a bit desensitized due to a constant barrage of statistics and scientific jargon. In chapter 9, the text discusses how a steep learning curve turned off new participants in activism in the 90's. I found myself feeling a bit overwhelmed by the end of it.

I would argue that this book is worth reading for anyone interested in the subject (as well as anyone who would like to understand those who were affected by AIDS), but it can require a bit of work.