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OverviewIn a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco's beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth. Full Product DetailsAuthor: Diane B. Paul (Harvard University) , Jeffrey P. Brosco (Professor of Clinical Pediatrics, University of Miami Leonard M. Miller School of Medicine)Publisher: Johns Hopkins University Press Imprint: Johns Hopkins University Press Dimensions: Width: 14.00cm , Height: 2.00cm , Length: 21.60cm Weight: 0.386kg ISBN: 9781421411316ISBN 10: 1421411318 Pages: 320 Publication Date: 26 January 2014 Recommended Age: From 17 Audience: General/trade , General Format: Paperback Publisher's Status: Active Availability: To order  Stock availability from the supplier is unknown. We will order it for you and ship this item to you once it is received by us. 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"ReviewsPaul 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 Author InformationAuthor Website: www.dianebpaul.comDiane 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. Tab Content 6Author Website: www.dianebpaul.comCountries AvailableAll regions |
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