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Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics
Stanford Center for Biomedical Ethics, 1215 Welch Road, Mod A, Stanford, CA 94305, USA
Department of Pediatrics, Division of Medical Genetics, Stanford University School of Medicine, 300 Pasteur Drive, Boswell Building A097, Stanford, CA 94304, USA
Irvine School of Medicine, University of California, 1001 Health Sciences Road, 252 Irvine Hall, Irvine, CA 92697, USA
Department of Genetics, Stanford University, Mail Stop-5208, Stanford, CA 94305, USA
Department of Sociology, Stanford University, Stanford, CA 94305, USA
* Author to whom correspondence should be addressed.
Received: 17 July 2013; in revised form: 26 August 2013 / Accepted: 22 September 2013 / Published: 14 October 2013
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. Conclusion: 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.
Keywords: genetic testing; direct-to-consumer; social networking; personalized medicine; disclosure of genetic risks
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MDPI and ACS Style
Lee, S.S.-J.; Vernez, S.L.; Ormond, K.; Granovetter, M. Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics. J. Pers. Med. 2013, 3, 275-287.
Lee SS-J, Vernez SL, Ormond K, Granovetter M. Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics. Journal of Personalized Medicine. 2013; 3(4):275-287.
Lee, Sandra S.-J.; Vernez, Simone L.; Ormond, K.E.; Granovetter, Mark. 2013. "Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics." J. Pers. Med. 3, no. 4: 275-287.