This 2-year project convened a multidisciplinary working group of national experts to analyze and generate recommendations on managing incidental findings and individual research results in genomic research using biobanks and large archives. In order to understand the genetic contribution to a host of diseases and conditions of great importance to public health, scientists are increasingly assembling large biobanks, archiving many individuals' DNA and health information for scientific reanalysis over time. However, there is no clarity about what individual health information, if any, should be given back to those people generous enough to participate by contributing their DNA and health information. Some prominent biobanks are giving back none at all. This project convened leading experts on bioethics, genomics, biobanking, and law to recommend policies and practices on return of both incidental findings and individual research results that may have importance for the donor.
09/25/09 to 07/31/11
- Susan M. Wolf, JD (Consortium on Law and Values in Health, Environment & the Life Sciences)
- Jeff Kahn, MPH, PhD (Center for Bioethics)
- Frances Lawrenz, PhD (Dept. of Educational Psychology)
- Brian Van Ness, PhD (Dept. of Genetics, Cell Biology & Development)
- Publication of consensus recommendations:
- Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM, Cho MK, Christman MF, Green RC, Hall R, Judy J, Keane M, Knoppers B, Koenig BA, Kohane IS, LeRoy B, Maschke KJ, McGeveran W, Ossorio P, Parker LS, Petersen GM, Richardson HS, Scott JA, Terry SF, Wilfond BS, Wolf WA. Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets. Genetics in Medicine 2012;14(4):361-384. Download PDF (515.12 KB)
- A symposium published in Genetics in Medicine
- A symposium published in the Minnesota Journal of Law, Science & Technology
- A bibliography
- A national conference on "Should We Return Individual Research Results and Incidental Findings from Genomic Biobanks & Archives?"