Key drivers of family-level utility of pediatric genomic sequencing: a qualitative analysis to support preference research.

ABSTRACT: Given that pediatric genomic sequencing (GS) may have implications for the health and well-being of both the child and family, a clearer understanding of the key drivers of the utility of GS from the family perspective is needed. The purpose of this study is to explore what is important to caregivers of pediatric patients regarding clinical GS, with a focus on family-level considerations. We conducted semi-structured interviews with caregivers (n = 41) of pediatric patients who had been recommended for or completed GS that explored the scope of factors caregivers considered when deciding whether to pursue GS for their child. We analyzed the qualitative data in multiple rounds of coding using thematic analysis. Caregivers raised important family-level considerations, in addition to those sp

SUBMITTER: Smith HS 

PROVIDER: S-EPMC10133279 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature