What to do with incidental findings in biobanks and other archived genetic datasets?
Recommendations from a two-year project funded by the USA’s National Institutes of Health (NIH) around Incidental Findings (IFs) and Individual Research Results (IRRs) from structured collections (biobanks, biorepositories and databases) generating and housing genetic and genomic data are offered in this special article appearing in Genetics in Medicine. The recommendations follow a previous project offering analysis and recommendations for researchers and Institutional Review Boards involving the discovery of IFs that have potential health or reproductive significance for research participants. This follow-on report looks at such findings in the context of biobanks and similar structures of large-scale genetic and/or genomic research and in particular considers “the ethical underpinning of responsibilities … in a biobank research system to collaborate in handling IFs and IRRs”. The authors offer “systemic analysis of how the responsibilities can best be discharged both in new biobank research systems considering these problems prospectively and in preexisting research systems”. Ten concrete recommendations for handling IFs and IRRs in the context of biobank-type structures are put forward.
