Cloth $30.00 ISBN: 9780226924977 Published December 2012
Paper $18.00 ISBN: 9780226273617 Will Publish May 2015
E-book $7.00 to $30.00 About E-books ISBN: 9780226924991 Published December 2012

Saving Babies?

The Consequences of Newborn Genetic Screening

Stefan Timmermans and Mara Buchbinder

Stefan Timmermans and Mara Buchbinder

320 pages | 3 line drawings, 1 table | 6 x 9 | © 2012
Cloth $30.00 ISBN: 9780226924977 Published December 2012
Paper $18.00 ISBN: 9780226273617 Will Publish May 2015
E-book $7.00 to $30.00 About E-books ISBN: 9780226924991 Published December 2012

It has been close to six decades since Watson and Crick discovered the structure of DNA and more than ten years since the human genome was decoded. Today, through the collection and analysis of a small blood sample, every baby born in the United States is screened for more than fifty genetic disorders. Though the early detection of these abnormalities can potentially save lives, the test also has a high percentage of false positives—inaccurate results that can take a brutal emotional toll on parents before they are corrected. Now some doctors are questioning whether the benefits of these screenings outweigh the stress and pain they sometimes produce. In Saving Babies?, Stefan Timmermans and Mara Buchbinder evaluate the consequences and benefits of state-mandated newborn screening—and the larger policy questions they raise about the inherent inequalities in American medical care that limit the effectiveness of this potentially lifesaving technology.
Drawing on observations and interviews with families, doctors, and policy actors, Timmermans and Buchbinder have given us the first ethnographic study of how parents and geneticists resolve the many uncertainties in screening newborns. Ideal for scholars of medicine, public health, and public policy, this book is destined to become a classic in its field.

Carol A. Heimer | Northwestern University

"Smart, humane, and beautifully written, Saving Babies? is respectful but critical of clinicians, parents, and policymakers as it vividly connects the reader to the human tragedies on the page. Without being maudlin, Stefan Timmermans and Mara Buchbinder show us how newborn screening really works. Despite the grim subjects, this profound book is a real treat to read."

Dr. Wayne W. Grody, M.D., Ph.D. | UCLA School of Medicine

"Recently expanded newborn screening for genetic disorders aims to enhance one of the triumphs of public health, right up there with vaccination and sanitation. But with millions of babies screened each year in all fifty states, one can lose sight of the fact that each family’s situation is unique and that their perception of the screening program – its benefits, its anxieties, its unpronounceable disease names—will differ. Stefan Timmermans and Mara Buchbinder capture those individual stories with sensitivity and compassion. The clinical scenarios they describe, all true, are fascinating and eye-opening, revealing attitudes and responses by both the families and their physicians that are often quite unexpected, but always poignant."


Introduction: The Consequences of Newborn Screening

Chapter 1. The Expansion of Newborn Screening
Chapter 2. Patients-in-Waiting
Chapter 3. Shifting Disease Ontologies
Chapter 4. Is My Baby Normal?
Chapter 5. The Limits of Prevention
Chapter 6. Does Newborn Screening Save Lives?

Conclusion: The Future of Expanded Newborn Screening


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