期刊
GENETICS IN MEDICINE
卷 16, 期 1, 页码 78-84出版社
NATURE PUBLISHING GROUP
DOI: 10.1038/gim.2013.76
关键词
newborn screening; parents; whole-genome-sequencing
资金
- University of Michigan Health System
- Department of Pediatrics and Communicable Diseases
- Center for Genetic Research Ethics and Law from the National Human Genome Research Institute [2P50-HG-003390-06]
- Clinical Sciences Scholars Program at the University of Michigan
- National Institute for Child Health and Human Development [K23HD057994]
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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