Parents' interest in whole-genome sequencing of newborns

Aaron J. Goldenberg*, Daniel S. Dodson, Matthew M. Davis, Beth A. Tarini

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

52 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)78-84
Number of pages7
JournalGenetics in Medicine
Volume16
Issue number1
DOIs
StatePublished - Jan 2014

Keywords

  • newborn screening
  • parents
  • whole-genome sequencing

ASJC Scopus subject areas

  • Genetics(clinical)

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