Heel Sticks and Amnios: Disjunctures and Discrepancies in Prenatal and Newborn Genetic Screening

Award Year: 2005	Investigator: Rachel Grob, Barbara Katz Rothman	Budget: $275,000	Categories: Genetics, Medical Ethics
Abstract: Genetics and genetic testing are often discussed as revolutionizing modern medicine, but so far this revolution has largely occurred in the world of medical care for pregnant women and newborns. Co-investigators Barbara Katz Rothman, Ph.D. and Rachel Grob, Ph.D. examine the expansion of genetic screening and testing for pregnant women and newborns, the differences between optional services and mandatory screening requirements, and the unintended consequences of screening and testing. Their project, Heel Sticks and Amnios: Disjunctures and Discrepancies in Prenatal and Newborn Genetic Screening, considers a number of controversial issues, including whether it's useful to screen for rare or untreatable conditions; the lack of informed consent, counseling and follow-up in newborn screening; effects of testing and screening on families; and the various forces that are shaping public policy in this area including the influence of emotional appeals from parents of affected children.