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.

1117176271
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.

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

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

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

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

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Overview

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.


Product Details

ISBN-13: 9780801883255
Publisher: Johns Hopkins University Press
Publication date: 05/29/2006
Pages: 264
Product dimensions: 5.00(w) x 8.00(h) x 0.81(d)
Age Range: 18 Years

About the Author

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.

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.

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 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

What People are Saying About This

Kaja Finkler

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.

Kaja Finkler, University of North Carolina at Chapel Hill

From the Publisher

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.
—Kaja Finkler, University of North Carolina at Chapel Hill

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