Social Movements and the Transformation of American Health Care

By Jane C. Banaszak-Holl; Sandra R. Levitsky et al. | Go to book overview

6
The Strength of Diverse Ties:
Multiple Hybridity in the Politics of Inclusion
and Difference in U.S. Biomedical Research

Steven Epstein

Since the mid-1980s, an eclectic assortment of reformers in the United States has argued that expert knowledge about human health is dangerously flawed—and health research practices are fundamentally unjust—because of inadequate representation of women, racial and ethnic minorities, children, the elderly, and other groups within clinical research populations. Under pressure from within and without, federal agencies of the U.S. Department of Health and Human Services (DHHS) have ratified a new consensus that biomedical research must be routinely sensitive to human differences, especially those related to sex and gender, race and ethnicity, and age.1 Academic researchers receiving federal funds, and pharmaceutical manufacturers hoping to win regulatory approval for their company’s products, are now enjoined to include women, racial and ethnic minorities, children, and the elderly as research subjects in many forms of clinical research; measure whether research findings apply equally well to research subjects regardless of their categorical identities; and question the presumption that findings derived from the study of any single group, such as middle-aged white men, might be generalized to other groups.

This repudiation of so-called “one-size-fits-all medicine” in favor of group specificity is apparent not just in the realm of free-floating ideas. It is anchored to institutional changes—new policies, guidelines, laws, procedures, bureaucratic offices, and mechanisms of surveillance and enforcement—that are the products of collective action. New expectations are codified in a series of federal laws, policies, and guidelines issued between 1986 and the present that require or encourage research inclusiveness and the measurement of difference. The mandate is reflected, as well, in the establishment, from the early 1980s forward, of a series of offices within the federal health bureaucracy, including offices of women’s health and offices of minority

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