title: Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics.
abstract: Little is known about how consumers of direct-to-consumer personal genetic services share personal genetic risk information. In an age of ubiquitous online networking and rapid development of social networking tools, understanding how consumers share personal genetic risk assessments is critical in the development of appropriate and effective policies. This exploratory study investigates how consumers share personal genetic information and attitudes towards social networking behaviors.
  
  
  METHODS
  Adult participants aged 23 to 72 years old who purchased direct-to-consumer genetic testing from a personal genomics company were administered a web-based survey regarding their sharing activities and social networking behaviors related to their personal genetic test results.
  
  
  RESULTS
  80 participants completed the survey; of those, 45% shared results on Facebook and 50.9% reported meeting or reconnecting with more than 10 other individuals through the sharing of their personal genetic information. For help interpreting test results, 70.4% turned to Internet websites and online sources, compared to 22.7% who consulted their healthcare providers. Amongst participants, 51.8% reported that they believe the privacy of their personal genetic information would be breached in the future.
  
  
  CONCLUSIONS
  Consumers actively utilize online social networking tools to help them share and interpret their personal genetic information. These findings suggest a need for careful consideration of policy recommendations in light of the current ambiguity of regulation and oversight of consumer initiated sharing activities.
authors.affiliation: Stanford Center for Biomedical Ethics, 1215 Welch Road, Mod A, Stanford, CA 94305, USA. sandra.lee@stanford.edu.
authors.forename: Sandra Soo-Jin
authors.initials: SS
authors.lastname: Lee
authors.affiliation: Irvine School of Medicine, University of California, 1001 Health Sciences Road, 252 Irvine Hall, Irvine, CA 92697, USA. slvernez@gmail.com.
authors.forename: Simone L
authors.initials: SL
authors.lastname: Vernez
authors.affiliation: Stanford Center for Biomedical Ethics, 1215 Welch Road, Mod A, Stanford, CA 94305, USA. kormond@stanford.edu.
authors.forename: K E
authors.initials: KE
authors.lastname: Ormond
authors.affiliation: Department of Sociology, Stanford University, Stanford, CA 94305, USA. mgranovetter@stanford.edu.
authors.forename: Mark
authors.initials: M
authors.lastname: Granovetter