HHBe Grand Rounds: Routine Genome Sequencing of Newborns: Who, What, When, How

Newborns have been screened for an increasing but defined number of disorders since the 1960s, but pressure is growing to perform whole-genome sequencing, first of sick newborns and increasingly of all newborns. In this talk, I will focus on the growing ethical and empirical literature about the potential benefits and challenges of performing universal genomic screening of newborns.

Ellen Wright Clayton is a preeminent scholar of the ethical, legal, and social implications of advances in genomics, focusing on the sociocultural and technical environments in which these developments are occurring. A graduate of Yale Law School and Harvard Medical School, she is the Craig-Weaver Professor of Pediatrics as well as Professors of Law, Health Policy, and Biomedical Informatics at Vanderbilt University Medical Center and Vanderbilt University. She has received numerous NIH grants, including the transdisciplinary Center for Excellence in Genomics Research on Genetic Privacy and Identity in Community Settings. A member of the National Academies for 20 years, she has served in numerous capacities – as a member of its executive committee, as chair of several committees, and as co-chair of the Academies Report Review Committee. She has also been a member of Tennessee’s Newborn Screening Committee for more than 30 years.