Elsevier

Genetics in Medicine

Volume 16, Issue 1, January 2014, Pages 78-84
Genetics in Medicine

Original Research Article
Parents’ interest in whole-genome sequencing of newborns

https://doi.org/10.1038/gim.2013.76Get rights and content
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Abstract

Purpose

The aim of this study was to assess parents’ interest in whole-genome sequencing for newborns.

Methods

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.

Results

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.

Conclusion

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.

Genet Med16 1, 78–84.

Keywords

newborn screening
parents
whole-genome sequencing

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