Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.

ABSTRACT: Genomic researchers face an ethical dilemma regarding feedback of individual results generated from genomic studies. In the African setting, genomic research is still not widely implemented and, coupled with this, the limited African-specific guidelines on how to feedback on individual research findings. A qualitative study was performed to assess participants' expectations and preferences regarding the feedback of secondary findings from genomic research. Participants were parents of children with a developmental disorder, enrolled in the Deciphering Developmental Disorders in Africa (DDD-Africa) research project, and were purposefully selected. Three deliberative focus group discussions were conducted with 14 participants. Each deliberative focus group consisted of two separate audio-rec

SUBMITTER: Shingwenyana B 

PROVIDER: S-EPMC11093881 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature