Save Cover Preview

Inclusion

The Politics of Difference in Medical Research

Inclusion

The Politics of Difference in Medical Research

With Inclusion, Steven Epstein argues that strategies to achieve diversity in medical research mask deeper problems, ones that might require a different approach and different solutions.

Formal concern with this issue, Epstein shows, is a fairly recent phenomenon. Until the mid-1980s, scientists often studied groups of white, middle-aged men—and assumed that conclusions drawn from studying them would apply to the rest of the population. But struggles involving advocacy groups, experts, and Congress led to reforms that forced researchers to diversify the population from which they drew for clinical research. While the prominence of these inclusive practices has offered hope to traditionally underserved groups, Epstein argues that it has drawn attention away from the tremendous inequalities in health that are rooted not in biology but in society.

“Epstein’s use of theory to demonstrate how public policies in the health profession are shaped makes this book relevant for many academic disciplines. . . . Highly recommended.”—Choice

“A masterful comprehensive overview of a wide terrain.”—Troy Duster, Biosocieties

Read More Read Less

Read an excerpt.

Chicago Studies in Practices of Meaning

Medicine

Political Science: Public Policy

Sociology: Medical Sociology, Social Institutions

Reviews
Table of contents
Excerpt
Gallery
Awards
Author Events
Related Titles

Reviews

“In this fascinating book, Steven Epstein explains how beginning in the 1980s a variety of social movements prevailed in changing inclusion criteria of unrepresented research subjects in clinical trials in the United States. In a relatively short period of time, medical researchers were expected to include more women, racial and ethnic minorities, children, and elderly as research subjects. Epstein pays close attention to the historical precedents of the arguments used in favor and against this change in thinking about what kind of differences matter in biomedical research, its consequences for research, and its far-reaching implications for identity politics. The result is a convincing, widely-accessible, and well-written account of the legal, political, social, and scientific aspects of this change in policy and thinking.”--Stefan Timmermans, author of Postmortem

Stefan Timmermans

"Epstein’s use of theory to demonstrate how public policies in the health profession are shaped makes this book relevant for many academic disciplines. . . . Highly recommended."

Choice

"Inclusion offers a balanced analysis of the positive and negative effects of institutional changes on groups that are traditionally underrepresented in biomedical research and on biomedical research in general. . . . The lessons learned from this book may help researchers and policymakers who are involved in biomedical research rethink their conceptualization of human subgroups for analysis."

Elisa J. Gordon | New England Journal of Medicine

"A masterful comprehensive overview of a wide terrain."

Troy Duster | Biosocieties

"Epstein’s book bursts with theoretical insights. . . . Inclusion also vividly and concretely illustrates how power operates through state and scientific classificatory processes. . . . It will be of interest to many--scholars in science studies, critical studies of race and gender, social movement studies, political sociology, and social theory, as well as medical professionals and health policy advocates and experts."

Deborah B. Gould | American Journal of Sociology

Table of Contents

Acknowledgments
List of Abbreviations

Introduction: Health Research and the Remaking of Common Sense
1 How to Study a Biopolitical Paradigm
2 Histories of the Human Subject
3 The Rise of Resistance: Framing the Critique of the Standard Human
4 The Path to Reform: Aligning Categories, Targeting the State
5 Opposition to Reform: Controversy, Closure, and Boundary Work
6 Formalizing the New Regime
7 From the Standard Human to Niche Standardization
8 Counts and Consequences: Monitoring Compliance
9 The Science of Recruitmentology and the Politics of Trust
10 To Profile or Not to Profile: What Difference Does Race Make?
11 Sex Differences and the New Politics of Women’s Health
12 Whither the Paradigm?
Conclusion: Identity, Difference, Disparities, and Biopolitical Citizenship

Chronology
Interviews
Notes
Index