Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease.

ABSTRACT: Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed diffe

SUBMITTER: Young JL 

PROVIDER: S-EPMC9441547 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature