title: Parents' interest in whole-genome sequencing of newborns.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio, USA.
authors.forename: Aaron J
authors.initials: AJ
authors.lastname: Goldenberg
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Daniel S
authors.initials: DS
authors.lastname: Dodson
authors.affiliation: 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.
authors.forename: Matthew M
authors.initials: MM
authors.lastname: Davis
authors.affiliation: Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA.
authors.forename: Beth A
authors.initials: BA
authors.lastname: Tarini
mesh_terms: D001294:Attitude to Health; D003625:Data Collection; D005820:Genetic Testing; D015894:Genome, Human; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D058007:Physicians, Primary Care; D017422:Sequence Analysis, DNA; D014481:United States