The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease (review)

In Troubled Dream, Wailoo and Pemberton ask how twentieth-century medical science has interacted with the politics of race. Their new book examines medical research and public health initiatives that have targeted three genetic diseases associated with three specific ethnic and racial groups: Tay-Sachs disease among Jews, cystic fibrosis among whites, and sickle cell disease among African Americans. The comparison draws out productive questions about race, medicine, and genetics, on the threshold of this present era of genomic medicine. The authors' major theme turns out, surprisingly, not to be the pitfalls of biological racism. While acknowledging the large body of historical writings on scientific racism, the book cuts through older questions about race and medicine on a productive new slant. Brief and synoptic, it confronts a vital question head-on. How do we understand the promise of twentieth-century medical science in the context of the socio-political realities of race?

A brief examination of these three genetic diseases highlights how the science of human genetics works within a medical enterprise that is influenced by the social and political identities of its patients. The book shifts smoothly between internal and external perspectives on the affected groups, managing to suggest the complex compromises involved in racial categorization and identity, without losing itself in the fray. The authors carry their central point easily. The path of progress in medical care for these specific diseases runs through the difficult terrain of twentieth-century racial politics. This message will not be news to any researcher working on sickle cell disease, for example. But Wailoo and Pemberton imply the larger argument, as well, that to understand health broadly in the twentieth-century requires attention to questions about ethnicity and race in an era of emerging identity politics. The book manages by turns to be sympathetic, provocative, and exacting about the implications of racial and ethnic identity in American life, exposing commonalities and differences in the politics of health among the three groups under consideration—though more by implication than by direct analysis.

Weighing in at less than 200 pages, the book measures its success in its selectivity. It is perfectly suited for use in teaching the history of medicine and health. I expect that the book will work equally well as an effective introduction to its several, hefty topics and as a stimulus to debate in a graduate seminar. The authors only lightly sketch the many potential comparisons among their three case-studies, intentionally leaving much of this work to the readers and to those gathered around the seminar table.

This stripped-down approach to the analysis of race should, of course, prompt the reader's caution. Wailoo and Pemberton handle the three racial/ethnic groups in roughly similar ways. Their point is that comparisons are useful, even when the differences matter tremendously. To make the point succinctly, however, they must avoid asking where the important differences lie or how they might function. In part, the authors are wisely skirting the overworked and unproductive distinction between nature and nurture. But these three ethnic and racial identities have carried fundamentally different, and changing, significances over the last century. The major issues of exclusion, privilege, marginality, and power can be read back into the medical stories to some extent. But these racial/ethnic categories have complex historical trajectories. The simple, categorical comparison screen off a host of vital questions. How does whiteness develop as a tacit, passively acquired form of privilege, while Jewishness needs increasingly to be demonstrated or invoked? Blackness and Jewishness seem to allow varying degrees of belonging with historically changing significance, while whiteness emerges from the nineteenth century as an undiscriminating qualification. The straightforward comparison of Tay-Sachs disease, sickle cell disease, and cystic fibrosis will hopefully prompt challenging questions, but it may also risk blocking them from view.

Fortunately, Wailoo and...