Managing Incidental Findings and Research Results in Genomic Biobanks and Archives

Principal investigator(s)

  • Susan M. Wolf, JD (Consortium on Law and Values in Health, Environment & the Life Sciences)

Co-Investigators

  • Jeff Kahn, MPH, PhD (Center for Bioethics)
  • Frances Lawrenz, PhD (Dept. of Educational Psychology)
  • Brian Van Ness, PhD (Dept. of Genetics, Cell Biology & Development)

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.

Project outcomes