Parents’ interest in whole-genome sequencing of newborns

Genetics in Medicine

(2013)

doi:10.1038/gim.2013.76

Received: 18 February 2013
Accepted: 19 April 2013
Published online: 06 June 2013

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 Med advance online publication 6 June 2013

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