Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus Kevin Kinsella, Ra

摘要

This report summarizes the proceedings of a workshop convened in February 2014 to consider guidelines for returning individual results from genomic research using population-based banked specimens. The workshop was sponsored by the National Center for Health Statistics (NCHS) and convened by the Committee on National Statistics (CNSTAT) in the Division of Behavioral and Social Sciences and Education (DBASSE) of the National Research Council (NRC). The workshop was organized by a six-member steering committee composed of experts in the fields of bioethics, law and genetics, biomedical genetics, and demography. The committee was chaired by Wylie Burke, University of Washington, and included Leslie G. Biesecker, National Human Genome Research Institute; Jeffrey Botkin, University of Utah; Mildred K. Cho, Stanford University; Ellen Wright Clayton, Vanderbilt University; and Eileen M. Crimmins, University of Southern California. The committee provided indispensable guidance in developing the workshop agenda, securing expert presentations, and facilitating the conduct of the workshop. Although the steering committee members played a central role throughout, they did not actively participate in writing this summary. The committee would like to thank NCHS staff members Virginia Cain, Jennifer Madans, Geraldine McQuillan, and Kathryn Porter for their planning-meeting input prior to the workshop. The presentations during the workshop provided the basis for lively and informative discussions. We greatly appreciate the contributions of Benjamin Berkman.