The Quest for Objectivity in Prenatal Genetic Care: Conundrums of the “Pro-Information” Movement
The occasion of Diane Paul's residency at the Brocher Foundation offers us the opportunity to welcome her for a seminar. Diane is a historian of science and medicine whose seminal research has spanned from histories of evolution and genetics in relation to eugenics and the nature-nurture debate, to issues related to contemporary prenatal and neonatal genetic testing for inherited conditions such as phenylketonuria.
Tuesday 2 April 2019 (12h15 - 14h00) - Géopolis - 5408
Non-invasive prenatal testing has the potential to increase both the uptake and scope of prenatal diagnosis, a prospect that has alarmed both critics of abortion and of selective abortion. One response has been a “pro-information” movement that seeks to legislatively regulate what health-care providers tell pregnant women about Down syndrome and other conditions that can be diagnosed prenatally. Its underlying assumption is that if women/couples are provided objective or impartial information about life with such conditions, abortion rates for fetal anomaly will substantially decline. This talk traces the history of the pro-information movement and discusses several issues it raises, in particular, 1) what it means to claim that information in this domain is objective or balanced and, 2) whose perspectives – those of patients, parents, partners, health professionals, the “public” — should count (or count more) in making health-state valuations?