Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study.

ABSTRACT:

Background

Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding.

Methods

We surveyed members of the JHS (Jackson Heart Study, n=960), the FHS (Framingham Heart Study; n=955), and African American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would

SUBMITTER: Joffe S 

PROVIDER: S-EPMC7173999 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature