There is a dearth of empirical data on the potential benefits and harms of returning genomic results related to adult-onset conditions that are not medically actionable in pediatric patients. Concerns include distress, discrimination, loss of future autonomy, or altered family functioning. The PROGRESS study explores these outcomes in an observational trial disclosing pediatric-onset (P-O) and adult-onset (A-O) results to children and their parents. Participants include adolescents (ages 11-17) with a genetic variant identified and returned through Geisinger’s MyCode Genomic Screening and Counseling Program. Parents and adolescents with A-O and P-O results were invited to participate in qualitative interviews one month post disclosure. Analysis showed that no adolescents or parents in the A-O (n=12) or P-O (n=12) cohorts expressed regrets regarding genetic testing and receiving results and mainly felt having the genetic information was beneficial. No participants reported needing additional emotional support following result disclosure. The A-O cohort generally voiced no changes to adolescents’ health and lifestyle behavior. The P-O cohort brought up lifestyle modifications such as drinking more water, limiting or increasing physical activity, and increased worry about body aches. Neither cohort reported adverse impacts on family relationships. Results at one month indicate that A-O and P-O cohorts responded similarly to their genetic results, with the P-O cohort reporting a more immediate impact on certain lifestyle behaviors. These results suggest that returning genomic results related to A-O conditions that are not medically actionable in childhood has a limited impact on adolescents and parents who seek A-O results.
