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The Troubled Dream of Genetic Medicine

, 264 pages
April 2006



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The Troubled Dream of Genetic Medicine

Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease

Winner of the History of Science category of the Professional and Scholarly Publishing Awards given by the Association of American Publishers

Why do racial and ethnic controversies become attached, as they often do, to discussions of modern genetics? How do theories about genetic difference become entangled with political debates about cultural and group differences in America? Such issues are a conspicuous part of the histories of three hereditary diseases: Tay-Sachs, commonly identified with Jewish Americans; cystic fibrosis, often labeled a "Caucasian" disease; and sickle cell disease, widely associated with African Americans.

In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how these diseases—fraught with ethnic and racial meanings for many Americans—became objects of biological fascination and crucibles of social debate. Peering behind the headlines of breakthrough treatments and coming cures, they tell a complex story: about different kinds of suffering and faith, about unequal access to the promises and perils of modern medicine, and about how Americans consume innovation and how they come to believe in, or resist, the notion of imminent medical breakthroughs.

With Tay-Sachs, cystic fibrosis, and sickle cell disease as a powerful backdrop, the authors provide a glimpse into a diverse America where racial ideologies, cultural politics, and conflicting beliefs about the power of genetics shape disparate health care expectations and experiences.

Keith Wailoo is a professor in the Department of History and the Institute of Health, Health Care Policy, and Aging Research at Rutgers University. He is the author of Drawing Blood: Technology and Disease Identity in Twentieth-Century America (Johns Hopkins University Press, 1997) and Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health (University of North Carolina Press, 2001). Stephen Pemberton is an assistant professor in the Federated Department of History at the New Jersey Institute of Technology and Rutgers University.

"Concise and well-argued... essential reading for anyone interested in genetics, disease, and the meaning of race."

"Practitioners of the future will have to take these separate histories into account as this new era unfolds."


"Perfectly suited for use in teaching the history of medicine and health... At once concise, readable, and demanding in its parsimony. It should not be missed by anyone who cares about the emerging shape of health care in the age of genomic medicine."

"The book deserves to be read by a large public—and in particular by those who are in charge of, or concerned with, decisions about health politics."

"No book brings together contemporary understandings of genetics as a social rather than a biological project as nicely as The Troubled Dream of Genetic Medicine. This book, accessible to both scholars and general readers, greatly contributes to our understanding of the ways in which concepts developed in genetic medicine influence people's definitions of ethnicity and race."

" The Troubled Dream of Genetic Medicine brings into focus intriguing concepts at the intersection of science and society... This book ought to encourage others to produce biosocial histories of this kind."

"The authors are two historians of health care policy and politics, and their well-researched account of the 'genetic revolution' reveals drama and intrigue rarely seen in descriptions of medical history."

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