title: Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants.
abstract: OBJECTIVE
  To predict the potential public health impact of personal genomics, empirical research on public perceptions of these services is needed. In this study, 'early adopters' of personal genomics were surveyed to assess their motivations, perceptions and intentions.
  
  
  METHODS
  Participants were recruited from everyone who registered to attend an enrollment event for the Coriell Personalized Medicine Collaborative, a United States-based (Camden, N.J.) research study of the utility of personalized medicine, between March 31, 2009 and April 1, 2010 (n = 369). Participants completed an Internet-based survey about their motivations, awareness of personalized medicine, perceptions of study risks and benefits, and intentions to share results with health care providers.
  
  
  RESULTS
  Respondents were motivated to participate for their own curiosity and to find out their disease risk to improve their health. Fewer than 10% expressed deterministic perspectives about genetic risk, but 32% had misperceptions about the research study or personal genomic testing. Most respondents perceived the study to have health-related benefits. Nearly all (92%) intended to share their results with physicians, primarily to request specific medical recommendations.
  
  
  CONCLUSIONS
  Early adopters of personal genomics are prospectively enthusiastic about using genomic profiling information to improve their health, in close consultation with their physicians. This suggests that early users (i.e. through direct-to-consumer companies or research) may follow up with the health care system. Further research should address whether intentions to seek care match actual behaviors.
authors.affiliation: Division of Health Policy and Management, University of Minnesota School of Public Health, Minneapolis, MN, USA. sgollust@umn.edu
authors.forename: S E
authors.initials: SE
authors.lastname: Gollust
authors.forename: E S
authors.initials: ES
authors.lastname: Gordon
authors.forename: C
authors.initials: C
authors.lastname: Zayac
authors.forename: G
authors.initials: G
authors.lastname: Griffin
authors.forename: M F
authors.initials: MF
authors.lastname: Christman
authors.forename: R E
authors.initials: RE
authors.lastname: Pyeritz
authors.forename: L
authors.initials: L
authors.lastname: Wawak
authors.forename: B A
authors.initials: BA
authors.lastname: Bernhardt
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003256:Community Participation; D005260:Female; D020022:Genetic Predisposition to Disease; D023281:Genomics; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010465:Perception; D057285:Precision Medicine; D011446:Prospective Studies; D055815:Young Adult