A survey of aortic disease biorepository participants' preferences for return of research genetic results.

ABSTRACT: There is ongoing debate on whether and what research genetic results to return to study participants. To date, no study in this area has focused on aortopathy populations despite known genes that are clinically actionable. Participants (n = 225, 79% male, mean age = 61 years) with an aortopathy were surveyed to assess preferences for receiving research genetic results. Participants were 'very' or 'extremely likely' to want results for pathogenic variants in aortopathy genes with implications for family members (81%) or that would change medical management (76%). Similarly, participants were 'very' or 'extremely likely' to want actionable secondary findings related to cancer (75%) or other cardiac diseases (70%). Significantly lower interest was observed for non-actionable findings-pathogen

SUBMITTER: Love-Nichols J 

PROVIDER: S-EPMC8192438 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature