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The Troubled Dream of Genetic Medicine

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

Keith Wailoo and Stephen Pemberton

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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...

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.

Reviews

Reviews

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.

Fascinating.

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.

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Book Details

Publication Date
Status
Available
Trim Size
5
x
8
Pages
264
ISBN
9780801883262
Table of Contents

Acknowledgments
Introduction: Ethnic Symbols in Conflicted Times
1. Eradicating a ''Jewish Gene'': Promises and Pitfalls in the Fight against Tay-Sachs Disease
2. Risky Business in White America: Gene

Acknowledgments
Introduction: Ethnic Symbols in Conflicted Times
1. Eradicating a ''Jewish Gene'': Promises and Pitfalls in the Fight against Tay-Sachs Disease
2. Risky Business in White America: Gene Therapy and Other Ventures in the Treatment of Cystic Fibrosis
3. A Perilous Lottery for the Black Family: Sickle Cells, Social Justice, and the New Therapeutic Gamble
Conclusion: Dreams amid Diversity
Notes
Glossary
Index

Author Bios
Keith Wailoo
Featured Contributor

Keith Wailoo

Keith Wailoo is the Townsend Martin Professor of History and Public Affairs and Vice Dean of the Woodrow Wilson School of Public and International Affairs at Princeton University. He is the author of Drawing Blood: Technology and Disease Identity in Twentieth-Century America, Pain: A Political History, and Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health.
Featured Contributor

Stephen Pemberton, Ph.D.

Stephen Pemberton is an associate professor in the Federated Department of History at the New Jersey Institute of Technology and Rutgers University, Newark. He is coauthor of The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease, also published by Johns Hopkins.
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