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

Parents' interest in whole-genome sequencing of newborns.

Author information

1
Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio, USA.
2
Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA.
3
1] Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA [2] Division of General Medicine and Gerald R. Ford School of Public Policy, University of Michigan, Ann Arbor, Michigan, USA [3] Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA.

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.

PMID:
23743552
PMCID:
PMC4164384
DOI:
10.1038/gim.2013.76
[Indexed for MEDLINE]
Free PMC Article

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