Exploring parental perspectives on pediatric genome testing, research, and data management in a multicultural population

Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds. This exploratory pilot study in a diverse, underserved population will elicit parent attitudes, concerns and preferences related to genomic testing, research, data ownership and management, providing essential data to inform development of educational materials, consent tools, and genomic data management platforms to enable lifelong patient-centered genomic medicine in all populations.