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. 2014 Jan;16(1):78-84.
doi: 10.1038/gim.2013.76. Epub 2013 Jun 6.

Parents' interest in whole-genome sequencing of newborns

Aaron J Goldenberg  1 , Daniel S Dodson  2 , Matthew M Davis  3 , Beth A Tarini  2
Affiliations

Parents' interest in whole-genome sequencing of newborns

Aaron J Goldenberg et al. Genet Med. 2014 Jan.

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.

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Conflict of interest statement

Disclosure: The authors declare no conflict of interest.

Figures

Figure 1
Figure 1. Language from the newborn WGS scenarios presented to participants
WGS, whole-genome sequencing.
Figure 2
Figure 2. Parental interest in whole-genome sequencing through their state's NBS program versus through their pediatrician's office
NBS, newborn screening.
See this image and copyright information in PMC

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