Promotional Information

A highly compelling story about a successful medical intervention-literally life changing-that has also had unintended consequences. This study is extremely relevant to contemporary genomic medicine. -- M. Susan Lindee, University of Pennsylvania

Table of Contents

Foreword, by Charles E. Rosenberg
Preface
List of Abbreviations
Introduction: Pearl Buck, PKU, and Mental Retardation
1. The Discovery of PKU as a Metabolic Disorder
2. PKU as a Form of Cognitive Impairment
3. Testing and Treating Newborns, 1950–1962
4. The Campaign for Mandatory Testing
5. Sources of Skepticism
6. New Paradigms for PKU
7. Living with PKU
8. The Perplexing Problem of Maternal PKU
9. Who Should Procreate? Perspectives on Reproductive Choice and Responsibility in Postwar America
10. Newborn Screening Expands
Epilogue: "The Government Has Your Baby's DNA": Contesting the Storage and Secondary Use of Residual Dried Blood Spots
Acknowledgments
A Note on Sources
Notes
Index

About the Author

Diane B. Paul is a professor emerita at the University of Massachusetts, Boston, and a research associate at the Museum of Comparative Zoology, Harvard University. Jeffrey P. Brosco, M.D., is a professor of clinical pediatrics at the Miller School of Medicine, University of Miami. He serves as chair of the Pediatric Bioethics Committee at Jackson Memorial Hospital and is associate director of the Mailman Center for Child Development.

Reviews

Paul and Brosco are to be congratulated on producing an extremely worthwhile, interesting and very readable book. I highly recommend it to geneticists, bioethicists, to those directly or indirectly involved in newborn screening, and to all others who wish to understand the basis for the current enthusiasm about the role of genetics and genetic screening in health and the prevention of disease. -- Harvey L. Levy Journal of Medical Genetics The PKU Paradox will be essential reading for anyone interested in the sociocultural, ethical and historical aspects of PKU and newborn screening more generally. -- Mara Buchbinder Social History of Medicine This book is a fascinating biography of this syndrome... enriched by illustrations from public health campaigns, advertising material for PKU-friendly supplements, and interviews with people who have lived with PKU and who have given first-hand accounts of their lived experience... The PKU Paradox is a useful and provoking addition to the Biographies of Disease series. -- Philippa Martyr Health and History The ability to illustrate a wide range of historical themes through a single, compelling case will make The PKU Paradox particularly useful for undergraduate teaching, as will the short, concisely written chapters. It is not an easy task to clearly portray the history of a subject as complex and elusive as disease, and Paul and Brosco have done an admirable job in this regard. The PKU Paradox will be essential reading for anyone interested in the sociocultural, ethical and historical aspects of PKU and newborn screening more generally. -- Mara Buchbinder Social History of Medicine Paul and Brosco are to be commended for reminding us all how central the PKU story has been to the development of genetics and medicine, the connection of genotype to phenotype to society, and to the way this society views people with intellectual disabilities. This is a book that should be read by all geneticists and physicians and people with an interest and concern about individuals for with intellectual impairments. -- John B. Jenkins Quarterly Review of Biology The PKU Paradox is a clearly and engagingly written book that provides an excellent introduction to the history of a disease and its broader implications in twentieth-century biomedicine. -- Soraya De Chadarevian Isis This is a deeply researched and most readable history of PKU from its discovery in 1930... up to the success story of the present day. -- Neil R. M. Buist Journal of Inherited Metabolic Disease