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STIS Seminar Series
STIS Seminar Series: Professor Diane Paul
"The Government Has Your Baby": A historical perspective on the controversy over consent in newborn screening

September 23 2013

Venue: David Hume Tower Conference Room; The University of Edinburgh

Organised by: STIS and Innogen

The seminar begins at 3:30pm and will be followed by a drinks reception.

Abstract

Choices related to the structure of newborn screening for PKU made in the 1960s and 70s are embedded in current laws, institutions, and practices, and continue to provide the core framework for current newborn screening programs. An example is the lack of informed consent requirements for screening in the USA. Whether to require consent from parents was not debated in the 1960s, and when the issue did emerge in the 1980s, the lack of a requirement was justified on the grounds that no rational person would decline screening for a devastating disease that could only be effectively treated if diagnosed in infancy. Expansion of newborn screening to conditions where diagnosis is of uncertain medical benefit to the newborn thus confronts a structural and normative framework shaped by assumptions specific to PKU. That framework presents similar challenges to scientists and policy makers who would like to make research use of the rich resource of dried bloodspots that have generally been collected without parental consent. A historical perspective on screening helps us understand why these have become such difficult and emotionally-charged conundrums and the nature of the interests at stake.

Phenylketonuria

Speaker Biography

Diane B. Paul is Professor Emerita, University of Massachusetts Boston and Research Associate, Museum of Comparative Zoology, Harvard University. She has recently held visiting appointments in the Program in Ethics and Health, Harvard Medical School, the UCLA Center for Society and Genetics, the Department of Medical History and Bioethics, University of Wisconsin – Madison, the Zoology Department, University of Otago, Dunedin, NZ, and the Community Genetics section of the Vrige University Medical Center, Amsterdam. Much of her research has focused on the histories of eugenics and the nature-nurture debate. She has also published on policy issues in contemporary prenatal and neonatal genetic testing, including newborn screening for phenylketonuria and other inherited disorders, and on debates over consanguineous marriage. Her new book, The PKU Paradox: A Short History of a Genetic Disease (co-authored by Jeffrey P. Brosco, MD), will be published by the Johns Hopkins University Press this Fall. Current projects involve studies of contrasting images of Robert FitzRoy, captain of HMS Beagle, the history of eugenics in New Zealand, the trajectory of newborn screening in Europe, and how we think, have come to think, and should think about rare disorders.

Further Details

For further information, please contact Alyson Macdonald at alyson.macdonald@ed.ac.uk or 0131 650 9113