Diane B. Paul
Professor Emerita - University of Massachusetts Boston
Bioéthique, éthique, Histoire de la médecine
The Quest for Objectivity in Prenatal Genetic Care: Contested PerspectivesDiane B. Paul is Professor Emerita at the University of Massachusetts Boston and Research Associate in Population Genetics at Harvard University. Since retiring from UMass Boston, she has taught at UCLA and the University of Wisconsin—Madison and held research appointments at the Vrige University Medical Center in Amsterdam, the University of Edinburgh, and the University of Otago in Dunedin, NZ. Diane’s research in the history of science and medicine has focused on evolution and genetics, including the histories of eugenics and the nature-nurture debate. Her historical work often has policy and bioethical dimensions. Recent projects along these lines includes studies of shifting attitudes towards first-cousin marriage and of issues in both neonatal and prenatal genetic testing. She is currently exploring several questions arising from efforts to achieve objectivity in the domain of prenatal genetic counseling. This project traces the history and spread of the effort to discourage selective abortion, explaining why it gained traction when and where it did and analyzing how tensions between anti-abortion and pro-choice activists have been managed. It also explores two clusters of bioethical issues that the movement raises: What it means to claim that information in this domain is “objective” or “balanced.” Whose perspectives should count (or count more) in making policy that takes health-state evaluations into account: those of “outsiders” (commonly-termed public or community perspectives) or those of “insiders,” who possess experiential knowledge?
Diane B. Paul is Professor Emerita at the University of Massachusetts Boston and Research Associate in Population Genetics at Harvard University. Since 2004, when she retired from UMass Boston, she has held visiting teaching appointments at the Center for Society and Genetics at UCLA and the Department of Medical History and Bioethics at the University of Wisconsin – Madison and research appointments at the University of British Columbia, the Harvard Medical School Program in Ethics and Health, the Vrige University Medical Center in Amsterdam, the Science and Innovation Unit at the University of Edinburgh, the Zoology Department at the University of Otago in Dunedin, NZ, and the Institute for the Medical Humanities at the University of Texas Medical Branch in Galveston. Her research has primarily focused on the histories of evolution and genetics, especially in relation to eugenics and the nature-nurture debate. She has also published policy-oriented work on controversies over cousin marriage and on contemporary prenatal and neonatal genetic testing. Her books include Controlling Human Heredity: 1865 to the Present (Humanities/Random House, 1995), The Politics of Heredity: Essays on Eugenics, Biomedicine, and the Nature-Nurture Debate (SUNY Press, 1998), The PKU Paradox: A Short History of a Genetic Disease (with Jeffrey P. Brosco, MD; Johns Hopkins University Press, 2013), and, most recently, Eugenics at the Edges of Empire: New Zealand, Australia, Canada and South Africa (co-edited by John Stenhouse and Hamish G. Spencer; Palgrave Macmillan, 2017). More information, including a current cv, can be found on her website at http://www.dianebpaul.com.