Families' experiences of receiving adult- and pediatric-onset genetic results.

ABSTRACT: There is a scarcity of empirical data on the potential psychosocial and behavioral effects of returning genomic results for adult-onset conditions not medically actionable in pediatric patients. Potential harms include distress, discrimination, loss of future autonomy, or family functioning changes. The Pediatric Reporting of Genomic Results Study (PRoGRESS) explores outcomes of disclosing pediatric- and adult-onset genomic findings to families in an observational trial. Participants include adolescents (ages 11-17) with a genetic variant identified and returned through Geisinger's MyCode Genomic Screening and Counseling Program and their parents. This program involves returning pathogenic and likely pathogenic variants in a list of genes consistent with the American College of Medical Gen

SUBMITTER: Goehringer J 

PROVIDER: S-EPMC11919580 | biostudies-literature | 2025 Apr

REPOSITORIES: biostudies-literature