ELSIcon2022 Flash: Engaging Adolescents in Genomic Decision Making

ELSIcon2022 • Flash • June 3, 2022

Amy Blumling, Melanie Myers, Cindy Prows, Kristin Childers-Buschie, Michelle McGowan

Background: Professional organizations have historically recommended against returning predictive adult-onset genetic test results and carrier status to children, to protect their future autonomy. Recent guidance suggests returning secondary findings, including some adult-onset conditions, to parents when children have sequencing for clinical purposes. While parents may opt in or out of receiving their child’s secondary findings, it is not clear what decisions adolescents would make when provided the opportunity to learn genetic findings for themselves. We are examining adolescents’ and young adults’ (and parents’, if applicable) decisions about learning predictive genomic information.

Methods: We are enrolling assenting (ages 13-17) and consenting (ages 18-21) adolescents in a prospective genomic screening study to assess the choices they make about receiving individual results. Participants are using an online tool to select preventable, treatable, and adult-onset conditions, as well as carrier status for autosomal recessive conditions. We are examining how choices differ between cohorts (as well as between adolescents and parents if applicable), and decision stability at two timepoints. Results will be returned based on participants’ choices.

Preliminary Results: Twenty-one assenting and 24 consenting adolescents have completed a study visit. Forty-four opted in to learning results; 1 opted out. Only 3 changed their decisions at 1 timepoint, suggesting overall decision stability.

Discussion: Findings from this study will contribute to best practices for engaging assenting and consenting adolescents in decisions to learn genomic research results. The findings of this empirical study will help to inform normative debates about predictive genetic testing in children.