Returning Genetic Results in Biobanks: Opening an International Dialogue. (360G-Wellcome-102608_Z_13_Z)

We seek funding to support an international Workshop devoted to the issue of return (or feedback) of individual research results and incidental findings in genomic biobanks. Partial funding has been obtained from the Brocher Foundation, U.S. National Institutes of Health, and the Swiss Academy of Medical Sciences. Whether or not to provide research results or incidental findings to participants whose specimens and/or data are collected in biobanks is a matter requiring urgent policy attention. I n 2012, the U.S. NIH established a consortium of funded investigators to address return of results. That mechanism allows for expanded dialogue and collaboration among U.S. researchers, but any national debate is of limited applicability. Comparative work is sorely needed to allow development of sound policy and best practices grounded in a diversity of global perspectives. The Workshop, to be held in November 2013, will bring together experts in the ethical, legal, and social implications (ELSI ) of genetic technologies. The Workshop will explore the issue of feedback of research results broadly, and will also address the cutting-edge issue of return of results to a participants family. This Workshop was enabled by, and will be a proof of principle for the ELSI 2.0 global initiative (Science, 2012).