The Consortium has seen significant recent impacts from our grant projects on return of results and incidental findings. On March 31, the Wellcome Trust and Medical Research Council (MRC) -- the major funders of biomedical research in the U.K.-- published a new “Framework on the Feedback of Health-Related Findings in Research.” Its first cite is to NIH-supported work on these issues led by Prof. Wolf, chair of the Consortium. The Framework goes on to discuss the 3-tier approach generated by that work. This new Framework will impact all research supported by the Wellcome Trust and MRC.
On March 27, Prof. Wolf (Principal Investigator on these Consortium projects) participated in a plenary panel on these issues at the annual meeting of the American College of Medical Genetics and Genomics (ACMG) in Nashville, where ACMG announced a major revision of its guidelines. The panel reexamined the controversial policy on incidental findings that ACMG had published a year ago. A Science piece by Wolf and two coauthors had criticized the ACMG approach for requiring analysis of 56 extra genes whenever clinical sequencing is performed, with no opt-out for patients. After the panel in Nashville, ACMG announced that its Board had decided to change ACMG policy to provide an opt-out to allow patient choice.