Inclusion: the Politics of Difference in Medical Research (review)

In his new book, Inclusion: the Politics of Difference in Medical Research, Steven Epstein charts the political controversies surrounding changes that took place in the mid 1980s through the mid 1990s requiring federally-funded investigators to include subjects of various subgroups in their biomedical research. Epstein examines the way social identities became embodied in various and highly particular states (e.g., the female body, the Asian body, the elderly body), and, more importantly, the assumption that these various embodied states were "medically incommensurable." (2) In other words, activists and government officials alike became convinced that what we know about some medical subjects cannot easily be translated to other medical subjects. In doing so, Epstein argues, they sought to replace the "standard human" (i.e., a 70-kg white male) with the inclusion-and-difference paradigm. Underlying this argument is not a mere demand for statistical representation, but an assumption that inclusion will correspond to some sort of broader benefit for members of the subgroups in question (e.g., better health, social justice, broader political representation). At the heart of the book, then, is a paradox that has long plagued American society: is it possible to eliminate health inequalities and ensure social justice for all if we must first acknowledge, study and focus on what makes us different?

Epstein draws upon three theoretical traditions in telling this story: theories about the production of scientific knowledge, the politics of institutional turmoil and change, and the making of identity and difference. Categorization, standardization and generalization are three key processes in this story, although Epstein continually reminds the reader of the malleable nature of boundaries at work here. These boundaries deal with how categories are drawn among research subjects, how standards shift in response to societal pressures, and how concepts and generalizations travel from one domain to another. Through extensive archival work and interviews, Epstein shows how these changes were triggered by a "tacit coalition" of activists from the radical and liberal feminist movements, as well as other advocacy groups for racial and ethnic minorities, the elderly and children's groups. These groups made a strategic decision to target the state, and sought changes in NIH procedures, although Epstein persuasively demonstrates that the impact of these changes has reverberated throughout biomedicine, including journal publication practices, medical education and pharmaceutical production. The story he tells, therefore, is one about both the "politicization of biomedicine" and the "biomedicalization of government." Medical research becomes a terrain on which notions of democracy, citizenship, participation and equality are worked on.

At the same time, Epstein is aware that the gains of such a development are laden with potential problems. He wisely points to the potential for racial profiling and gender profiling in medical research, as well as the potential to obscure underlying causal mechanisms of inequality through focusing solely on categories and classifications. Further, this approach may lead to biological essentialism, in which race and gender characteristics are seen as fundamental, rather than as socially constructed.

Epstein has done remarkable field work for the book, utilizing multiple sources to provide a multi-faceted coverage of the history and significance of changes in biomedical inclusion of groups and populations. He examines the controversies, takes us inside the heads and meeting rooms where decisions were made to change practices, and points out implications and consequences, both intended and unintended. For all its complexity and richness, Inclusion is also noteworthy for the clarity and brilliance of its prose. Epstein excels at employing words or catchphrases that perfectly capture the concept he's describing; terms such as biopolitical citizenship, categorical alignment, niche standardization and recruitmentology are bound to become part of the lexicon of future scholars who take up the study of biomedical research. Inclusion will be of interest to anyone in the fields of medical sociology, social movements, science studies and health policy – indeed, it will become essential reading for anyone absorbed by the ideological, institutional, structural, professional and...