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

Keith Wailoo (Author), Stephen Pemberton (Author)
4.5 out of 5 stars  See all reviews (2 customer reviews)

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Book Description

April 20, 2006 0801883261 978-0801883262 1

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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Customers buy this book with Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present $11.06

The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease + Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present


Editorial Reviews

Review

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

(Science 2006)

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

(Doris Teichler Zallen, PhD JAMA 2006)

Fascinating.

(Jackie Leach Scully Social History of Medicine 2007)

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.

(Christopher Crenner Journal of the History of Medicine 2008)

Offers interesting information and pertinent discussions... The book deserves to be read by a large public.

(Michel Morange Isis 2008)

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 2009)

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.

(Abidemi Adegbola, M.D. Child and Adolescent Psychiatry )

About the Author

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.


Product Details

  • Reading level: Ages 18 and up
  • Paperback: 264 pages
  • Publisher: The Johns Hopkins University Press; 1 edition (April 20, 2006)
  • Language: English
  • ISBN-10: 0801883261
  • ISBN-13: 978-0801883262
  • Product Dimensions: 8 x 4.8 x 0.7 inches
  • Shipping Weight: 8 ounces (View shipping rates and policies)
  • Average Customer Review: 4.5 out of 5 stars  See all reviews (2 customer reviews)
  • Amazon Best Sellers Rank: #678,090 in Books (See Top 100 in Books)

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2 of 2 people found the following review helpful:
5.0 out of 5 stars A powerful testimony to the power of prejudice even in the field of medical research., November 6, 2006
This review is from: The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease (Paperback)
The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease provides a history of diseases which have been connected with racial makeup, sparking ethnic controversies in their discussion and analysis. The authors draw links between biology and social issues, examining underlying influences on research and perspective of modern medicine and how Americans ultimately come to embrace or reject projected breakthroughs. From therapy as social justice to media headlines and changing social perspectives, THE TROUBLED DREAM OF GENETIC MEDICINE is a powerful testimony to the power of prejudice even in the field of medical research.

Diane C. Donovan

California Bookwatch
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4.0 out of 5 stars A good introduction to the topic, August 10, 2011
By 
E. Boylan (Chicago, IL USA) - See all my reviews
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This review is from: The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease (Paperback)
This book is an excellent, easy to understand introduction to its topic of the intersection of race and genetic medicine. I work in an area of clinical research adjacent to those discussed, and the various people and interests that drive this type of research were fairly and accurately represented as far as that representation went. The book does not go into great detail about how clinical trials are normally developed, funded, carried out, and reviewed in order to contrast these case studies with the norm-- something many people reading an introductory book may not understand. However, the three conditions discussed are well chosen and contrast with one another well enough that I think a layperson could come away from the book with a fair idea of the role research in genetic medicine has played for each.

This book does not provide more than a very introductory idea of how racial politics interact with the experience and treatment of these diseases. If you come to this book (as I did) from an interest in how race conditions experience of and access to clinical research, healthcare, and disease, you'll get a clear picture of how the material realities of each disease and treatment affect their communities. You'll get a less detailed picture of how each disease interacts with the affected community's cultures and histories with healthcare, research, and racial oppression. If you're interested in how anti-racist criticism and theory interact with the physical realities of any specific disease, you'll find food for your own thought but no real comment from the authors.

There's no criticism intended in that-- this is a great introduction to the individual diseases and to the topic of genetic medicine and adjacent issues such as healthcare access in the U.S. and its relationship with clinical research. This book would make excellent undergraduate course reading in any of those topics. If you're more experienced in thinking and reading about race, this book can provide a good foundation for thinking about genetic diseases in that context. But don't make the mistake of thinking that's what this book is for. And if you already know a lot about racial and genetic medicine (I didn't), you probably don't need this book.
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Inside This Book (learn more)
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First Sentence:
Since its discovery in the 1880s, Tay-Sachs disease (TSD) has always been experienced by parents as a tragic pathology, an inevitable downward spiral affecting very young children. Read the first page
Key Phrases - Statistically Improbable Phrases (SIPs): (learn more)
genetic matchmaking, desickling agents, gene therapy enterprise, gene doctors, sickle cell patients, lipid storage disorders, lung deterioration, tic fibrosis, enzyme replacement therapy, sickle cell disease, gene therapy research, genetic medicine, molecular disease, breakthrough medicine, autosomal inheritance, prophylactic penicillin
Key Phrases - Capitalized Phrases (CAPs): (learn more)
Dor Yeshorim, New York, Ashkenazic Jews, African Americans, American Jews, Jesse Gelsinger, United States, Cystic Fibrosis Foundation, James Wilson, Paul Gelsinger, Linus Pauling, Rabbi Ekstein, Francis Collins, Frank Deford, Orthodox Jews, Michael Kaback, New England Journal of Medicine, Ron Crystal, American Jewish, Sephardic Jews
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