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.
Content
Acknowledgments
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
Notes
References
Index
About the Author
Stefan Timmermans is professor and chair of sociology at the University of California, Los Angeles and the author of "Postmortem: How Medical Examiners Explain Suspicious Deaths", among other books.
Mara Buchbinder is assistant professor of social medicine and adjunct assistant professor of anthropology at the University of North Carolina at Chapel Hill.
Reviews
"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" – Carol A. Heimer, Northwestern University
"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" – Dr. Wayne W. Grody, M. D., Ph. D., UCLA School of Medicine
