Returning incidental findings to family members of deceased research participants: Perspectives from a cancer biobank. B. A. Koenig1, C. Radecki Breitkopf2, S. M. Wolf3, M. E. Robinson4, K. G. Rabe2, N. M. Lindor5, G. M. Petersen2 1) Social & Behavioral Sci/Inst Hlth & Aging, Univ California, San Francisco, San Francisco, CA; 2) Department of Health Sciences Research, Mayo Clinic, Rochester, MN; 3) Consortium on Law and Values in Health, Environment, and the Life Sciences, University of Minnesota, Minneapolis, MN; 4) Biomedical Ethics Program, Mayo Clinic, Rochester, MN; 5) Department of Health Sciences Research, Mayo Clinic, Scottsdale, AZ.
Intense debate surrounds the return of incidental findings to participants in genomics research. Should researchers offer results to family members after the participants death? Prior law and policy protect individual privacy, choice, and control, preserving each persons right not to learn the results of genetic tests. Given that actionable information, such as cancer risk, may be revealed by mutations shared among blood relatives, it is critical to develop evidence-based policy governing the management of results discovered after a participants death. There are no rigorous empirical data documenting preferences of research participants. We report the results of the first survey to inform this debate, using a comprehensive tool based on 51 in-depth interviews with participants and family members. Surveys were mailed to 6,137 participants from a registry of pancreatic cancer patients, their family members, and healthy controls, asking preferences about return of findings. 2 repeat mailings to non-responders were sent at 30-day intervals. We addressed protecting the right not to know vs. offering results; weighing the wishes of individuals vs. family benefit; and participants vs. researchers roles and obligations. 3,645 surveys were returned (464 affected/probands, 399 spouses, 1,040 unaffected blood relatives, 1,727 controls and 15 individuals whose status could not be determined; 59% response rate). 13% endorsed protecting the right not to know, with the majority choosing to offer genetic research results to all participants, even at the risk of upsetting those who may not want to be offered results. 57% endorsed whether blood relatives would benefit as a justification for offering results vs. 43% who gave priority to the wishes of the individual participant. 77% thought researchers bore responsibility to offer findings to participants. Participants supported offering results in spite of privacy protections, suggesting that the incidental findings debate must broaden to include consideration of return to family.
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