Symposium report-ethical and social considerations regarding return of secondary findings in atomic bomb survivors

The Radiation Effects Research Foundation (RERF) conducts research on the health effects of atomic bomb (A-bomb) radiation, supported by the long-term cooperation of survivors and their children. In response to concerns from A-bomb survivors, their offspring, and the global community, RERF has investigated transgenerational radiation effects for many years. Currently, RERF is planning the Trio Genome Study (TGS), which will utilize advanced genome sequencing to examine potential genetic effects on the offspring of survivors. This study could yield significant findings but also presents ethical challenges, particularly in ensuring that results are returned responsibly to the community. RERF first held an international workshop to address ethical, legal, and social issues related to genomic analysis in 2020, followed by formation of stakeholder committees to align the study with community perspectives. Most recently, in December 2024, an international symposium further explored frameworks important to the TGS, including risk communication, benefit-sharing, community involvement, and return of secondary findings. In genomic analysis, secondary findings comprise a deliberate search for pathogenic variants in an established list of genes in disorders associated with life-threatening manifestations. Returning these secondary findings to research participants is crucial from the perspective of benefit-sharing. Discussions emphasized the need for transparency in the return of secondary findings, especially those with actionable health implications, including sharing the rationale behind providing information about genetic variants to research participants. These frameworks will guide not only future RERF studies but also genomic research worldwide, ensuring that the findings benefit participants and communities.