The Strength of Diverse Ties: Multiple Hybridity in the Politics of Inclusion and Difference in U.S. Biomedical Research

Steven Epstein*

*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingChapter

7 Scopus citations

Abstract

Epstein considers collective efforts to transform federal health regulations guiding clinical research. Since 1986, federal laws, policies, and guidelines have either required or encouraged researchers to include women, racial and ethnic minorities, children, the elderly, and other groups within clinical research populations. This chapter analyzes the rise of the "anti-standardization resistance movement" that led to these institutional changes in law and policy. Epstein argues that the success of this effort depended in part on the hybrid character of the reformers' work. Specifically, the reform project was hybrid in its formal composition (consisting of a tacit coalition of numerous overlapping health movements); in its social basis (combining disease-specific activism with activism organized around social identities); in its knowledge politics (crossing the lines that supposedly divide laypeople from experts); in its power politics (encompassing ordinary people as well as elites, and biomedical outsiders as well as insiders); in its social location (crossing boundaries between civil society, market institutions, and the state); and in its tactics (combining reformist and radical approaches). While the hybrid character of the reform effort created a risk of internal conflict, Epstein argues that it also created important opportunities for the successful framing of the political project.

Original languageEnglish (US)
Title of host publicationSocial Movements and the Transformation of American Health Care
PublisherOxford University Press
ISBN (Electronic)9780199866519
ISBN (Print)9780195388299
DOIs
StatePublished - Sep 1 2010

Keywords

  • Clinical research
  • Coalitions
  • Collective action
  • Health care
  • Interest groups
  • Mobilization
  • Policy reform
  • Social movements

ASJC Scopus subject areas

  • Social Sciences(all)

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