Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants

Affiliation

• ¹ Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Emily Scholtes, J.D., is a graduate of the University of Minnesota Law School, where she served as a Research Assistant on the project on return of genomic results to family members. She then clerked for the U.S. Court of Appeals for the Eighth Circuit before going into private practice. The views expressed in this article are exclusively those of the authors. This article has been prepared for informational purposes only and does not constitute legal advice. Barbara A. Koenig, Ph.D., is Director of Bioethics and Professor of Bioethics and Medical Anthropology based at the Institute for Health & Aging, University of California, San Francisco. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Gloria M. Petersen, Ph.D., is Professor of Epidemiology, Department of Health Sciences Research, Mayo Clinic College of Medicine. She is a Founding Fellow of the American College of Medical Genetics and Genomics. She was one of three Principal Investigators on NIH/NCI/NHGRI grant 1R01CA154517 on return of genomic results to family members, including after the death of the proband. Susan A. Berry, M.D., is Professor of Pediatrics & Genetics and Division Director for Genetics and Metabolism in the Department of Pediatrics, University of Minnesota. She is a Fellow of the American Academy of Pediatrics and the American College of Medical Genetics. Laura M. Beskow, M.P.H., Ph.D., is Professor of Health Policy and Director of Research Ethics, Center for Biomedical Ethics & Society, Vanderbilt University. She received her M.P.H. with a concentration in health law from Boston University and her Ph.D. in Health Policy and Administration, with a minor in Epidemiology, at the University of North Carolina at Chapel Hill. Mary B. Daly, M.D., Ph.D., is a medical oncologist and epidemiologist who chairs the Department of Clinical Genetics at Fox Chase Cancer Center. Her research focuses on defining the best methods of communicating hereditary cancer risk information and on providing risk management strategies and coping skills to family members dealing with an increased risk for cancer. Conrad V. Fernandez, B.Sc., M.D., is Professor and Head of the Division of Pediatric Hematology/Oncology in the Department of Pediatrics, IWK Health Centre, Dalhousie University and is cross-appointed in Bioethics, Medicine, and Postgraduate Studies. He obtained his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia. Robert C. Green, M.D., M.P.H., is a medical geneticist and physician-scientist who directs the G2P Research Program in translational genomics and health outcomes in the Division of Genetics, Brigham and Women's Hospital and Harvard Medical School. He is also Associate Director for Research at Partners Personalized Medicine. Dr. Green leads and co-leads the MedSeq Project and the BabySeq Project respectively, two NIH-funded randomized trials designed to explore the medical, behavioral, and economic implications of integrating genome sequencing into the medical care of adults and newborns. Bonnie S. LeRoy, M.S., C.G.C., is Professor and Director of the Graduate Program in Genetic Counseling, University of Minnesota. Her work focuses on preparing graduate students to enter the profession of genetic counseling. Her research examines the ethical and social challenges associated with the genetic counseling profession. She served as the President of the American Board of Genetic Counseling from 2001-03. Noralane M. Lindor, M.D., is Professor of Medical Genetics in the Department of Health Sciences Research at Mayo Clinic in Scottsdale, Arizona. She received her medical degree from Mayo Medical School, and did her residencies at Bowman Gray School of Medicine in Winston-Salem, North Carolina, and at Mayo Clinic in Rochester. P. Pearl O'Rourke, M.D., is Director of Human Research Affairs at Partners HealthCare in Boston, and Associate Professor of Pediatrics at Harvard Medical School. She completed medical school at Dartmouth Medical School and the University of Minnesota Medical School. Carmen Radecki Breitkopf, Ph.D., is Professor of Health Services Research in the Department of Health Sciences Research at Mayo Clinic College of Medicine and Science in Rochester, Minnesota. She earned her Master's and Doctoral degrees in Psychology from the State University of New York at Albany. Mark A. Rothstein, J.D., is Herbert F. Boehl Chair of Law & Medicine and Director of the Institute for Bioethics, Health Policy & Law at the University of Louisville School of Medicine. He is past-President of the American Society of Law, Medicine & Ethics and serves as Public Health Ethics editor for the American Journal of Public Health. Brian Van Ness, Ph.D., is Professor of Genetics, Cell Biology and Development at the University of Minnesota. He earned his doctorate in Biochemistry from the University of Minnesota, completed a postdoctoral fellowship at Fox Chase Cancer Center, and has served as the Department Head and Director of the Institute of Human Genetics at the University of Minnesota. Benjamin S. Wilfond, M.D., is Director of the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine. He is past-President of the Association of Bioethics Program Directors, Chair for the Clinical Research Ethics Consultation Working Group for the Clinical and Translational Science Awards program, and a member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.