Evaluating parental personal utility of pediatric genetic and genomic testing in a diverse, multilingual population.

ABSTRACT: There is increasing evidence of the clinical utility of genetic and genomic testing (GT); however, factors influencing personal utility of GT, especially in diverse, multilingual populations, remain unclear. We explored these factors in a diverse cohort of parents/guardians (participants) whose children received clinical GT through the NYCKidSeq program. A total of 847 participants completed surveys at baseline, post-results disclosure, and 6 months (6m) post-results. The largest population groups were Hispanic/Latino(a) (48%), White/European American (24%), and Black/African American (16%). Personal utility was assessed using the Personal Utility (PrU) scale, adapted for pediatric populations and included on the surveys. Three PrU subscales were identified using factor analysis: practical

SUBMITTER: Marathe PN 

PROVIDER: S-EPMC11284555 | biostudies-literature | 2024 Jul

REPOSITORIES: biostudies-literature