Customer Reviews

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

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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

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.