The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy--especially genomic results for adult-onset conditions that are not medically actionable in childhood. Returning results for adult-onset conditions can spur life-saving preventive measures in the parents of affected children. However, there has been long-standing concern that children who receive a result for an adult-onset condition might experience negative psychosocial outcomes such as distress or altered family functioning.

The proposed project is a qualitative study of recruitment and retention into the All of Us Research Program (AoURP) at a federally qualified health center (FQHC). A key component of the NIH's Precision Medicine Initiative, the AoURP is unprecedented in scope. AoURP will enroll over one million Americans in its cohort and ask for a 10+ year commitment to participation at sign-up.

Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions that are not medically actionable in childhood. Empirical data to support either position in this controversy are, however, lacking.