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Young adults' attitudes toward pediatric whole-genome sequencing
Christopher H Wade1, Kailyn R Elliott2
1School of Nursing & Health Studies, University of Washington Bothell, Bothell, WA, USA.
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.
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