Parents' understanding of genome and exome sequencing for pediatric health conditions: a systematic review.

ABSTRACT: Genome and exome sequencing (GS/ES) are increasingly being used in pediatric contexts. We summarize evidence regarding the actual and perceived understanding of GS/ES of parents of a child offered testing for diagnosis and/or management of a symptomatic health condition. We searched four databases (2008-2021) and identified 1264 unique articles, of which 16 met inclusion criteria. We synthesized data from qualitative and quantitative studies and organized results using Ayuso et al. (2013)'s framework of key elements of information for informed consent to GS/ES. Many of the parents represented had prior experience with genetic testing and accessed a form of genetic counseling. Parents' understanding was varied across the domains evaluated. Parents demonstrated understanding of the various p

SUBMITTER: Gereis J 

PROVIDER: S-EPMC9626631 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature