Over the last decade, genomic sequencing technologies have dramatically improved the ability to diagnose newborns and children with genetic conditions. Demonstrating the value of these technologies is not straightforward, however, and ethical and logistical challenges to implementation of pediatric genomic medicine remain. This talk will provide an overview of the ways in which “value” has been conceptualized and measured in pediatric genomic medicine, illustrated with empirical examples from large NIH-funded research efforts, and discuss possibilities to advance multi-stakeholder input into value assessment moving forward.
Dr. Hadley Stevens Smith is a health economist and a scholar in the ethical, legal, and social implications (ELSI) of genomics. She studies clinical, patient-centered, and economic outcomes of genomic medicine, primarily for newborn and pediatric patient populations. The goal of her research program is to bolster decision making by clinicians, patients and families, and health care systems to advance efficient and ethical implementation of genomic technologies in clinical care. She uses a variety of survey, psychometric, and health services research methods in her work, as well as qualitative methods to conduct research that informs quantitative patient-centered analyses. Dr. Smith is currently funded on a K99/R00 Pathway to Independence Award from the National Human Genome Research Institute to study the family-level utility of pediatric genomic sequencing. She has been actively involved in several large-scale NIH-funded research studies in genomics, including the Clinical Sequencing Evidence Generating Research Consortium (CSER) and the BabySeq Project.
Dr. Smith completed a Bachelor of Science in Political Science and a Master of Public Service and Administration in Health Policy Analysis, both from Texas A&M University. She earned her PhD in Public Health (Health Economics track) at the University of Texas Health Science Center at Houston. After completing her PhD, Dr. Smith was a Health Policy Fellow in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She joined faculty of the Department of Population Medicine at Harvard Medical School and Harvard Pilgrim Health Care Institute in August 2022, where she is affiliated with the Center for Health Care Research in Pediatrics and the Precision Medicine Translational Research Center.
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