Inclusion: The Politics of Difference in Medical Research

Inclusion: The Politics of Difference in Medical Research

Inclusion: The Politics of Difference in Medical Research

Inclusion: The Politics of Difference in Medical Research

Synopsis

WithInclusion, 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

Excerpt

CHAPTER ONE
How to Study a Biopolitical Paradigm

This book tells a story about the politics of how human beings are known, classified, administered, and treated. At the center is the idea of what I call the “inclusion-and-difference paradigm”—the research and policy focus on including diverse groups as participants in medical studies and in measuring differences across those groups.

The word paradigm has become ubiquitous in recent years, and my use of it requires explanation. My goal is not to resurrect historian and philosopher of science Thomas Kuhn's familiar (but oft-criticized) account of decisive shifts over time in how communities of scientific practitioners look at the world. “Inclusion-and-difference” is not a paradigm in the strict Kuhnian sense, because it does not constitute the central set of assumptions guiding any scientific specialty group, nor is it restricted to any single such group. Neither am I claiming (as the use of Kuhn's term might lead some to imagine) that the new emphasis on inclusion and difference is a thoroughgoing medical “revolution,” marked by ideas that are radically incommensurable with those they replaced.

Instead, the inclusion-and-difference paradigm should be understood as an example of what I term a “biopolitical paradigm.” Building on Peter Hall's concept of the policy paradigm and Michel Foucault's characterization of biopolitics, I define biopolitical paradigms as frameworks of ideas, standards, formal procedures, and unarticulated understandings that specify how concerns about health, medicine, and the body are made the simultaneous focus of biomedicine and state policy. The inclusionand-difference paradigm is one such biopolitical paradigm, both because it reflects the presumption that health research is an appropriate and important site for state intervention and regulation and because it infuses the life sciences with new political import. While some might see . . .

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