Parents’ interest in whole-genome sequencing of newborns

TLDR

Whole‑genome sequencing is increasingly integrated into clinical and public health services, and these findings may guide the development of educational strategies and outreach messages for parents. This study aimed to assess parents’ interest in whole‑genome sequencing for newborns through a nationally representative survey of 1,539 parents. Participants were randomly assigned to receive one of two scenarios—whole‑genome sequencing offered via a state newborn‑screening program or via a pediatrician’s office—and surveyed about their interest. Overall interest was high, with 74% of parents expressing definite or some interest when offered through a state program and 70% when offered in a pediatrician’s office, and most parents identified test accuracy and the ability to prevent disease as very important.

Abstract

The aim of this study was to assess parents' interest in whole-genome sequencing for newborns.We conducted a survey of a nationally representative sample of 1,539 parents about their interest in whole-genome sequencing of newborns. Participants were randomly presented with one of two scenarios that differed in the venue of testing: one offered whole-genome sequencing through a state newborn screening program, whereas the other offered whole-genome sequencing in a pediatrician's office.Overall interest in having future newborns undergo whole-genome sequencing was generally high among parents. If whole-genome sequencing were offered through a state's newborn-screening program, 74% of parents were either definitely or somewhat interested in utilizing this technology. If offered in a pediatrician's office, 70% of parents were either definitely or somewhat interested. Parents in both groups most frequently identified test accuracy and the ability to prevent a child from developing a disease as "very important" in making a decision to have a newborn's whole genome sequenced.These data may help health departments and children's health-care providers anticipate parents' level of interest in genomic screening for newborns. As whole-genome sequencing is integrated into clinical and public health services, these findings may inform the development of educational strategies and outreach messages for parents.