Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank.

ABSTRACT: The return of individual genomic results (ROR) to research participants is still in its early phase, and insight on how individuals respond to ROR is scarce. Studies contributing to the evidence base for best practices are crucial before these can be established. Here, we describe a ROR procedure conducted at a population-based biobank, followed by surveying the responses of almost 3000 participants to a range of results, and discuss lessons learned from the process, with the aim of facilitating large-scale expansion. Overall, participants perceived the information that they received with counseling as valuable, even when the reporting of high risks initially caused worry. The face-to-face delivery of results limited the number of participants who received results. Although the participant

SUBMITTER: Leitsalu L 

PROVIDER: S-EPMC10474261 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature