Expanded Carrier Screening for an Increasingly Diverse Population: Embracing the Promise of the Future or Ignoring the Sins of the Past?

Race and ethnic groups have been tracking heritable conditions endemic within their communities for decades, but past public health screening programs—e.g., sickle cell testing for African Americans 1970s—were adopted with little thought to scientific accuracy or potential discrimination. Currently, carrier genetic testing is generally offered under professional guidelines aiming to balance potentially clinically actionable information with concerns about healthcare costs and patient anxiety: recommended testing on the basis of family history, self-reported race or ethnicity, or for a condition deemed worthy of universal screening. But some private companies have begun to offer expanded carrier screening, testing all conditions for all patients. Scientists at one such company reported in 2016 in JAMA that expanded carrier screening might increase detection of potentially serious genetic conditions. But what are the implications of returning ancestry information when patients seek medical advice? How do we explain to patients what results might mean for their baby when they have only been validated in other populations? This talk will explore policy options at the intersection of race, reproduction, and commercial use of data.
Kayte Spector-Bagdady, JD, M.Bioethics
Assistant Professor, Department of Obstetrics & Gynecology, Chief, Research Ethics Service, Center for Bioethics & Social Sciences in Medicine, University of Michigan Medical School
Recorded September 13, 2017