Return of research results from genomic biobanks: cost matters

Abstract

Return of individual research results (IRRs) to study participants has been, and continues to be, hotly debated. The role of biobanks in the return of research results had received little attention until the recent publication from Susan Wolf et al.,1 which presents a detailed discussion and 10 recommendations regarding the return of results from biobanks. The authors propose that if reidentification of an individual participant (whom they also call a “contributor”) is possible, the biobank, as the central hub in a biobank research system, should enable the system to (i) clarify the criteria for evaluating findings and develop a list of returnable findings; (ii) analyze a particular finding in relation to the aforementioned list/criteria; (iii) reidentify the individual participant/contributor; and (iv) recontact them to offer the finding. Wolf et al.1 propose that the biobank would bear the long-term responsibility for the return of incidental findings (IFs) and IRRs rather than the investigators themselves. These recommendations neither sufficiently reflect the wide variability in both the purpose and nature of biobanks nor do they take into account the associated costs to biobanks and the research system. Biobanks encompass disease-specific and healthy cohorts and range from small collections in individual laboratories to international collections involving many thousands of people.2