Genetic and genomic research increasingly involves placing DNA into biobanks, and a consensus statement from a US National Institutes of Health-funded working group says biobanks have a responsibility to report results back to research participants, report Nature News' Erika Check Hayden. In Genetics in Medicine, the University of Minnesota's Susan Wolf and her colleagues report their analysis of the "responsibilities involved in managing the return of incidental findings and individual research results in a biobank research system." From this, the researchers say that when identification of contributors is possible, there is a responsibility to offer findings to research participants. The researchers also outline how that responsibility may be managed.
In a related commentary, Wolf adds that just having a discussion about incidental findings and individual return of results is important. "Debating return of IFs and IRRs in genetic and genomic research involving biobanks is the next step toward recognizing research participants, as well as those who contribute specimens and data, as genuine and essential partners in the research process," she writes. And the National Human Genome Research Institute's Leslie Biesecker tells Check Hayden that "If we really believe this is medically valuable and useful data, then we have to act on it."
However, Check Hayden notes that the process of identifying and contacting research participants could be complicated. "What they have in mind is going to be expensive and difficult, particularly at a time when funding success is as low as it's ever been," Vanderbilt University's Ellen Wright Clayton adds.