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American Sociological Association: Steven Epstein Award Statement
Inclusion: The Politics of Difference in Medical Research, winner of the American Sociological Association Book Award 2009.
On its surface, the movement in the 1980s that resulted in institutional changes requiring medical researchers to include multiple racial/ethnic groups and women in their research suggests a victory for diversity.But what begins as a simple story grows in complexity in Steven Epstein’s book, Inclusion: The Politics of Difference in Medical Research.Epstein documents the wide range of advocacy groups that successfully led to reforms requiring medical researchers to diversify their potential subjects for clinical research.The arguments for inclusion were that racial/ethnic minorities, women, and, to a lesser extent, children and the elderly were insufficiently represented in past research.As a result, the health needs of these historically disadvantaged groups were being compromised.
Epstein considers how this policy change has mattered, acknowledging the benefits, but persuasively arguing that inclusion has been a double-edged sword.On one hand, racial/ethnic minorities and women have become routinely included in clinical trials.On the other hand, biologically-based arguments for differences have gained prominence at the same time.Indeed, Epstein contends that the new paradigm of “inclusion-and-difference” has tended to divert attention away from potentially important environmental sources for group differences in health.A largely unintended consequence of the “inclusion-and-difference” thinking is that the reason it is important to expand beyond studying white males is because there really is something essentially (biologically) different about these “other” groups.Requiring medical researchers to study traditionally underserved populations has, therefore, had complex consequences.
Of course, including racial/ethnic minorities and women in medical research could have resulted in greater sensitivity to environmental factors leading to group health differences, but Epstein notes that this is not the way it has generally played out.As one example, black/white differences in life expectancy became more readily assumed as given.The intent of including a broader array of social groups in medical research, therefore, while meant to improve underserved groups’ lives, has also inadvertently provided a framework for reifying health differences in biological terms.The problem is that when group differences are found in a particular outcome there is a tendency to view that difference as a result of essential features of individuals rather than search for potential contextual explanations.Epstein’s book struggles with the problem of how an emphasis on group differences between women and men and blacks and whites has, ironically, paved an easier path for the essentialist position.
The risk is that the current approach, emphasizing the inclusion of a wide range of groups under the assumption that they are different “fails to demand adequate attention to a crucial set of issues—specifically, the ways in which inequalities and power differentials in the broader society affect people’s exposure to health risks, their capacity to access quality medical care, and the likelihood that they will be subject to conscious or unconscious discriminatory treatment by health care professionals” (p. 299).In short, the emphasis on inclusion of different groups has resulted in an uphill battle for sociologically-grounded explanations for health disparities.
Epstein weaves literatures that span medical sociology, social movements, sociology of knowledge, political sociology, racial and ethnic studies, and gender and sexuality studies, into a compelling description of the complex relationship among science, the state, and society.With each additional layer of information, Epstein’s argument becomes more compelling. The book also has appeal outside of sociology.Indeed, anyone interested in health (and that is all of us) will appreciate Epstein’s contribution.