Returning Genetic Results in Biobanks: Opening an International Dialogue
November 19, 20 & 21, 2013
Barbara A. Koenig, PhD, University of California, San Francisco
Jane Kaye, DPhil, LLB, Oxford University
Bernice Elger, MD, PhD, MA, University of Basel
Susan M. Wolf, JD, University of Minnesota
This invitational workshop brought together 31 leading researchers and scholars from around the world, all experts in the ethical, legal and social implications (ELSI) of genetic technologies and biobanking to explore the issue of feedback of incidental findings and results to research participants. It was an international and comparative dialogue on the cutting-edge issue of sharing findings with a participant’s family and genetic kin, including after the participant’s death.
The workshop served to enhance the work of ELSI 2.0 for Genomics and Society, the U.S.-based Return of Results Consortium/CSER ELSI Working Group, and H3Africa. In addition, it resulted in a set of papers comparing international approaches to return of results and incidental findings and created rich online international resources to support development of sound policy and practices in the global genomics community.
The Consortium on Law and Values, led by Prof. Susan Wolf, continues its work on this issue as a co-organizer of the workshop, which is related to her current NIH-funded grant on “Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment.”
Funding for this workshop is provided by the Brocher Foundation, the National Human Genome Research Institute/National Institutes of Health, the Wellcome Trust, and the Swiss Academy of Medical Sciences.