University of California San Francisco: Barbara Koenig, PhD; Mayo Clinic of Medicine: Gloria Petersen, PhD; University of Minnesota: Susan Wolf, JD
A goal of this project is to understand whether the family members of participants in cancer biobank research wish to be told about unanticipated genetic findings - a contested topic. Leaders in law, bioethics, and genetics, working with patient advocates, will consider the preferences of cancer patients and family members, asking: "what is the right thing to do?" In a first-of-its-kind study, they will next develop-and go on to test- procedures to offer information about unexpected findings to future research participants. The results of this study will have a direct impact on: (1) genetics and cancer researchers, and, (2) participants in biobanks and genetic research, including cancer patients and their families.