Exploring broad consent in the context of the 100,000 Genomes Project: a mixed methods study.

ABSTRACT: The 100,000 Genomes Project (100kGP)-a hybrid clinical-research initiative-was set up to analyse whole-genome sequences (WGS) from patients living with a rare disease or cancer. The project positioned participant consent as being of central importance, but consent in the context of genomic testing raises challenging issues. In this mixed method study, we surveyed 1337 100kGP participants regarding their experiences of taking part in the project and conducted in-depth interviews with 24 survey respondents to explore these findings further. Survey responses were analysed using descriptive statistics and interview data were analysed thematically. The consent approach of the 100kGP resulted in a proportion of our study's participants not understanding the complexities of the project and what t

SUBMITTER: Ballard LM 

PROVIDER: S-EPMC7253456 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature