Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.

ABSTRACT: Genomics researchers are increasingly interested in what constitutes effective engagement of individuals from underrepresented groups. This is critical for longitudinal projects needed to inform the implementation of precision medicine. Return of results is one opportunity for engagement. The aims of this study were to determine participant perspectives on optimal engagement strategies and priorities for return of results and the extent to which focus groups were an effective modality for gathering input on these topics. We conducted six professionally moderated focus groups with 49 participants in a genomics research study. Transcripts from audio-recorded sessions were coded by two researchers and themes were discussed with the wider research team. All groups raised the issue of mistrust.

SUBMITTER: Lewis KL 

PROVIDER: S-EPMC8206196 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature