Book Review

Inclusion: The Politics of Difference in Medical Research

N Engl J Med 2007; 357:1060-1061September 6, 2007

Article

Inclusion: The Politics of Difference in Medical Research
(Chicago Studies in Practices of Meaning.) By Steven Epstein. 413 pp. Chicago, University of Chicago Press, 2007. $29. ISBN: 978-0-226-21309-5

The movement to reduce disparities in biomedical research has been driven largely by policies and practices that are designed to include underrepresented groups. Using a historical approach, Epstein provides a thorough account of how this movement created new conceptions of human research and human difference that supplanted hierarchical notions of human social order. He then shows that this movement has had limited positive effects on health and treatment since the 1980s and remains shortsighted in its efforts to redress social inequities in health.

This change in thinking about human difference was set in motion by criticism about the predominant use of white men and the underrepresentation of other groups in biomedical research. At the time of this shift, a white man was believed to be the standard human. Reformers argued that because women, minorities, children, and others had participated little in biomedical research, and because these groups were fundamentally different from the putative norm, knowledge that was gained from research on white men was not applicable to these other groups. Epstein demonstrates that the notion of biologic differences between human groups substantiated both the reformers' ideas and earlier ideas about who should be included in human research. Reformers have also transformed this ideology to promote equity and social justice in health.

The book describes the array of institutional changes that reformers promoted, including changes in federal laws, policies, practices, state bureaucratic offices, medical-journal guidelines, and medical curricula. Notable among these was the National Institutes of Health Revitalization Act of 1993, which mandated that clinical research include underrepresented groups and measure human differences, specifically by sex, race and ethnic background, and age. Because of the far-reaching effects of these policies, Epstein refers to this shift in thinking about measuring human difference as “the inclusion-and-difference paradigm.”

Epstein lays bare the subtleties, paradoxes, and internal contradictions of claims that are made by the proponents and the critics of the paradigm. He provides a critical analysis of the assumptions — most notably the biologic ones — that underlie constructions of human difference. He articulates how the tenacious and pervasive conceptualization of human difference as a matter of biology is still rarely questioned despite the fact that social categories such as race have been discounted scientifically. He appropriately attributes the persistence of such biologic reductionism in U.S. policies and medical research to the cultural tendency of Americans to embrace notions of biology as natural givens. Epstein shows how the availability and resonance of the category of race as a biologically based explanatory framework throughout recent history contributes to the resilience of the framework in biomedical science.

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. However, the improvements have been limited. Ironically, the momentum that was created by the inclusion-and-difference paradigm and the focus on a short list of subgroups that were politically determined to be medically relevant have hindered the effort to redress health disparities. Epstein makes the pivotal point that the inclusion-and-difference paradigm diverts attention from the examination of pathways leading to disparities in health and health care. He cautions against rooting differences in health in biology, because it may reinforce old hierarchies, thwart efforts to find other ways to conceptualize differences in subgroups, and result in the racial profiling of patients.

The book ends with a call to move the paradigm forward. Given the commitment to social justice that underpins the inclusion-and-difference paradigm, Epstein proposes that more than just the inclusion of subgroups and the examination of differences between them must occur. Fundamentally, it is important to institutionalize policies and practices that examine the causes of differences in power that lead to health disparities. 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. This process will ultimately improve their science so that it, in turn, can better address health disparities.

Elisa J. Gordon, Ph.D., M.P.H.
Albany Medical Center, Albany, NY 12208
gordone1@mail.amc.edu