Parents' motivations, concerns and understanding of genome sequencing: a qualitative interview study.

ABSTRACT: The 100,000 Genomes Project is a hybrid clinical and research project in which patients and parents are offered genome sequencing for cancer and rare and inherited disease diagnosis; all participants receive their main findings and contribute their data for research, and are offered optional secondary findings. Our aim was to explore participating parents' attitudes towards and understanding of genome sequencing in this hybrid context. We conducted in-depth telephone interviews with 20 parents of children with rare diseases participating in the 100,000 Genomes Project. Parents were positive about contributing to research, although some had needed reassurance about data protections. Although most felt positive about secondary findings, some could not recall or misunderstood key aspects. Som

SUBMITTER: Lewis C 

PROVIDER: S-EPMC7316711 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature