PKU Paradox

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.

• Foreword, by Charles E. RosenbergPrefaceList of AbbreviationsIntroduction: Pearl Buck, PKU, and Mental Retardation1. The Discovery of PKU as a Metabolic Disorder2. PKU as a Form of Cognitive Impairment3. Testing and Treating Newborns, 1950–19624. The Campaign for Mandatory Testing5. Sources of Skepticism6. New Paradigms for PKU7. Living with PKU8. The Perplexing Problem of Maternal PKU9. Who Should Procreate? Perspectives on Reproductive Choice and Responsibility in Postwar America10. Newborn Screening ExpandsEpilogue: "The Government Has Your Baby's DNA": Contesting the Storage and Secondary Use of Residual Dried Blood SpotsAcknowledgmentsA Note on SourcesNotesIndex

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 Significant book for readers interested in understanding the many factors and intricacies involved in the history of diseases, in particular genetic diseases... Provides a compelling argument against the simplistic and persistent view that genetic diseases are fixed in the lab. Instead, it proposes a complex contextual history, not only a more persuasive one, but also one that provides a model for comprehensive study of other diseases, genetic or not. British Journal for the History of Science Paul and Brosco enable the reader to shift their gaze from PKU the paradigm to PKU the disease, in all its historical and biological complexity. For this reason, this book will be of interest to historians and practitioners of medicine alike. Moreover, it also serves as an excellent example of the constructive possibilities inherent in a collaboration between historians and physicians, and indeed, of the value of such an approach. University of Toronto Medical Journal