PROGRAMS and SERVICES
Points to Consider in the Transition Toward Whole-Genome Sequencing in Human Subjects Research
Monday, May 7, 2012
1:00 to 3:00 pm
Ground Floor Conference Room 1227/1328
Refreshments Will Be Served
Sara C. Hull, Ph.D., Clinical Center Department of Bioethics
Whole-exome and whole-genome sequencing (WES/WGS) are powerful new tools which can help investigators identify the genetic variants (mutations) responsible for a broad range of Mendelian disorders and complex genetic phenotypes. However, WES/WGS represents a significant increase in the amount of data being gathered compared to traditional genetic research (i.e., candidate gene approaches). Research involving WES/WGS, while not necessarily raising novel ethical concerns, has amplified existing ones, and researchers are faced with an expanded set of ethical challenges related to the use of WES/WGS. Dr. Hull will review the ethical issues surrounding WES/WGS and will provide guidance on possible protocol and informed consent approaches, as well as considerations for the future.