Young adults' attitudes toward pediatric whole-genome sequencing

Personalized Medicine
Christopher H Wade, Kailyn R Elliott

Abstract

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. 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. 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. Differing preferences for pediatric WGS emphasize the importance that clinicians adopt responsive approaches when providing WGS and disclosing results to families.

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Methods Mentioned

BETA
Whole Genome Sequencing

Software Mentioned

Catalyst WebQ system
SPSS
Dedoose
Whole Genome Sequencing and You

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