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Impure Science: AIDS, Activism, and the Politics of Knowledge

✍ Scribed by Steven Epstein


Publisher
University of California Press
Year
1996
Tongue
English
Leaves
473
Series
Medicine and Society; 7
Edition
1
Category
Library

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✦ Synopsis


In the short, turbulent history of AIDS research and treatment, the boundaries between scientist insiders and lay outsiders have been criss-crossed 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.

✦ Table of Contents


Impure Science
Contents
Acknowledgments
Introduction Controversy, Credibility, and the Public Character of Aids Research
The Crisis of Credibility and the Rise of the AIDS Movement
The Politics of Trust and Distrust
The Distinctive Character of the AIDS Movement
Analyzing AIDS Controversies
Credibility and Trust in Scientific Fact-Making
Science Studies and the Problem of Knowledge-Making from Below
Science Studies and Social Movement Research
The Media and the Construction of Credibility
Medicine and the Professions
Constructing Social Reality
The Plan of the Book
Part One: The Politics of Causation
Part Two: The Politics of Treatment
The Conduct of Clinical Research.
The Interpretation of Studies.
The Politics of Risk and Regulation.
Conceptualizing Aids: Some Intellectual Debts
Part 1 The Politics of Causation
Chapter 1 The Nature of a New Threat
The Discovery of a "Gay Disease" (1981-1982)
First Reports
The Politics of Lifestyle
Claiming the Epidemic
Lifestyle vs. Virus (1982–1983)
The Expansion of Risk
Germs and Magic Bullets
Dissent at the Front Lines
Medical Uncertainty and Gay Skepticism
The Triumph of Retrovirology (1982–1984)
Gallo's Family of Viruses
The French Virus
An Addition to the Honor Roll?
"Strong Evidence of a Causative Involvement"
Koch's Postulates and the Proof of Causation
The Framing of AIDS
Chapter 2 HIV and the Consolidation of Certainty
The Construction of Scientific Proof (1984–1986)
The Blossoming of AIDS Research
Citation and the Construction of Facts
Blood and Chimps
HIV as "Obligatory Passage Point"
The Power of a Hypothesis
Science, the Media, and the Construction of Social Reality
The Appeal of a Virus
Alternative Viewpoints
Markers of Credibility
Chapter 3 Reopening The Causation Controversy
From Deafening Silence to the Pages of Science (1987–1988)
Posing the Challenge
A Controversy Takes Public Shape
Interests, Investments, and "Fallen Angels"
The Duesberg Story Goes Mainstream
Gay Despair, Gay Suspicion
The Establishment Hits Back
Amassing Credibility
The Consequences of Controversy
Consolidation and Refinement (1989–1991)
"Red Flags" at the Academy
Arenas of Controversy
The Heritage Foundation and the "Risk-Aids Hypothesis"
"The Impact of the Truck"
From Outside to Inside and Back Again
Chapter 4 The Debate That Wouldn't Die
The Controversy Reignites (1991–1992)
From Isolation to Organization
The "Drug-Aids Hypothesis"
The HIV Heretics and the "Murdoch Press"
Mavericks and High-Flyers
Gathering of the Tribes
Project Inform Stakes its Claims
Left and Right
The "Vietnam Syndrome"
"AIDS Without HIV"
The Dynamics of Closure: Whither the Controversy? (1992–1995)
The Definitive Study?
The Terms of the Debate
Causation and Credibility
Credibility Tactics
Mainstream and Alternative Media
Democracy as Rhetoric and Reality
From Causation to Treatment
Part 2 The Politics of Treatment
Chapter 5 Points of Departure
Targeting a Retrovirus (1984–1986)
The Logic of Treatment
The Genesis of Treatment Activism
Rights, Risks, and Ethics
The State of the Art, 1985
"Waiting for the Right Disease"
Clinical Trials Take Center Stage (1986–1987)
Becoming Experts
The Gold Standard
"Great Promise for Prolonging Life"
The Politics of "Indifference"
Placebos Under Attack
The Repudiation of Victimhood
Chapter 6 "Drugs Into Bodies"
Gaining Access (1987–1988)
"It's Not That Easy"
Sacrificial Lambs
Dual Roles and "Double Agents"
A Knowledge-Empowered Movement
A Lab of One's Own
Acting Up
The Discourse of Genocide
The FDA under Fire
Beyond the FDA
Learning New Languages
The "Impurities" of Activism
Chapter 7 The Critique of Pure Science
AZT and the Politics of Interpretation (1989–1990)
Signs of Rapprochement
AZT: "The Time Has Come"
Poison? Or Just Mediocre?
Two Committees, Two Conclusions
Activism and the Manufacture of Knowledge (1989–1991)
Methodology to the Rescue
The Questions of Real Importance
Credibility and Representation
Access, Heterogeneity, and Pragmatism
The Politics of Purity
Heterogeneity and Social Difference
Old Dogs and New Tricks
Chapter 8 Dilemmas and Divisions in Science and Politics
Combination Therapy and the "Surrogate Markers" Debate (1989–1992)
The Origins of a Bandwagon
Surrogate Markers to the Rescue
The "Future that we all Envisioned"
Between "Science" and "Policy"
The Genie in the Bottle
Inside and Outside the System
New Antiviral Research and the "Receding" Bottleneck
A Seat at the Table
The Reconstitution of Identity
The Diversification of Treatment Activism
The Politics of Cleavage
Chapter 9 Clinical Trials and Tribulations
The Search for New Directions (1992–1993)
"Outsmarting Science"
A "New Paradigm" for Treatment Activism
The Science of "Concordology"
Berlin
Doctors, Researchers, and "Cookbook Medicine"
Living with Uncertainty (1993–1995)
AZT: More "Pieces of the Elephant"
The Holy Grail of Statistics
East Coast, West Coast
Back to Basics
"Cocktails" and "Synergy"
Promoting "Good Science"
Conclusion Credible Knowledge Hierarchies of Expertise, and the Politics of Participation in Biomedi...
Science and the Struggle for Credibility
The Boundaries of Impure Science
Credibility and the Management of Uncertainty
Pathways to Credibility
The Transformation of AIDS Research
Credit Where Credit is Due
The Politics of Access
"Situated Knowledges" and the Lure of Science
Trials and Truth-Making
The Legacy of AIDS Activism
The Refashioning of Patients and Doctors
New Voices on the Medical Horizon
Expertise and Democracy
Methodological Appendix
Sources
Symmetry and the Study of Scientific Controversies
Archeology and Genealogy
Content Analysis
Scientific Journal Articles
New York Times Articles
Notes
Introduction
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Conclusion
Methodological Appendix
Index
A
B
C
D
E
F
G
H
I
J
K
L
M
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Q
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