Reexamining the Right Not to Know

Benjamin E. Berkman, J.D., M.P.H., gave a plenary address at the OHRP Research Community Forum co-sponsored with Hackensack University Medical Center in New Jersey in April 2017. His presentation addressed various aspects of individuals' choice whether to receive information about genetic incidental findings that might arise in clinical care or research, and ethical considerations related to whether individuals have an absolute right not to know such information. Mr. Berkman is the Deputy Director of the NHGRI Bioethics Core and faculty member in the NIH Department of Bioethics, where he serves as the head of the section on the ethics of genetics and emerging technologies.