title: Engagement and communication among participants in the ClinSeq Genomic Sequencing Study.
abstract: As clinical genome sequencing expand its reach, understanding how individuals engage with this process are of critical importance. In this study, we aimed to describe internal engagement and its correlates among a ClinSeq cohort of adults consented to genome sequencing and receipt of results.
  
  
  
  This study was framed using the precaution adoption process model (PAPM), in which knowledge predicts engagement and engagement predicts subsequent behaviors. Prior to receipt of sequencing results, 630 participants in the study completed a baseline survey. Engagement was assessed as the frequency with which participants thought about their participation in ClinSeq since enrollment.
  
  
  
  Results were consistent with the PAPM: those with higher genomics knowledge reported higher engagement (r = 0.13, P = 0.001) and those who were more engaged reported more frequent communication with their physicians (r = 0.28, P < 0.001) and family members (r = 0.35, P < 0.001) about ClinSeq. Characteristics of those with higher engagement included poorer overall health (r = -0.13, P = 0.002), greater seeking of health information (r = 0.16, P < 0.001), and more recent study enrollment (r = -0.21, P < 0.001).
  
  
  
  These data support the importance of internal engagement in communication related to genomic sequencing.Genet Med 19 1, 98-103.
authors.affiliation: Genetics Services Research Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.|Current address: NextGxDx, Inc., Franklin, Tennessee, USA.
authors.forename: Gillian W
authors.identifier: 0000-0003-0320-1708
authors.initials: GW
authors.lastname: Hooker
authors.affiliation: Genetics Services Research Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Kendall L
authors.identifier: 0000-0002-1860-9362
authors.initials: KL
authors.lastname: Umstead
authors.affiliation: Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Katie L
authors.identifier: 0000-0002-2292-6854
authors.initials: KL
authors.lastname: Lewis
authors.affiliation: Social Network Methods Section, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Laura K
authors.identifier: 0000-0002-0197-3811
authors.initials: LK
authors.lastname: Koehly
authors.affiliation: Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Leslie G
authors.initials: LG
authors.lastname: Biesecker
authors.affiliation: Genetics Services Research Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Barbara B
authors.initials: BB
authors.lastname: Biesecker
mesh_terms: D001483:Base Sequence; D002874:Chromosome Mapping; D003142:Communication; D005190:Family; D005260:Female; D015894:Genome, Human / Q000235:genetics*; D023281:Genomics; D059014:High-Throughput Nucleotide Sequencing; D006801:Humans; D008297:Male