Young adults’ attitudes toward pediatric whole-genome sequencing

Abstract

Aim: To characterize the views of young adults toward integrating whole-genome sequencing (WGS) into standard pediatric care, particularly when used as a supplement to newborn screening. Materials & methods: This mixed methods descriptive study assessed the perspectives of a diverse group of 18- and 19-year olds (n = 145) in the USA using an informational video and online survey. Results: Young adults typically recommended disclosing WGS results to both parents and children during childhood. In the qualitative analysis, most participants emphasized the anticipated health benefits of pediatric WGS, while a minority discussed possible negative emotional and developmental impacts. Conclusion: Differing preferences for pediatric WGS emphasize the importance that clinicians adopt responsive approaches when providing WGS and disclosing results to families.