Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.

ABSTRACT: Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in a

SUBMITTER: Sanderson SC 

PROVIDER: S-EPMC4795230 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature