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.
Highlights
The convergence of genomic sequencing technologies, ubiquitous internet connectivity and broad proliferation of social networking tools have contributed to the current context of direct-to-consumer (DTC) genetic testing
Our study addresses the current gap in published research on consumer use of DTC personal genomic services, attitudes towards social networking, and sharing experiences of personal genomic information
Our study suggests that consumers of DTC personal genetic testing services actively use social networking sites and share their personal genetic information with others through the Internet
Summary
The convergence of genomic sequencing technologies, ubiquitous internet connectivity and broad proliferation of social networking tools have contributed to the current context of direct-to-consumer (DTC) genetic testing. This paper discusses findings from a mixed methods study on sharing decisions among individuals, who have purchased DTC personal genetic services and explores consumer experiences and perspectives on social networking and personal genetic information. DTC personal genomics companies offer consumers an increasingly broad array of services and platforms through which they may share their results with others, including friends, families and online acquaintances and audiences [25]. ―do-it-yourself‖ genetic health studies [26] While these various venues are available to consumers, little empirical research has probed how consumers of DTC personal genetic testing engage in these sharing practices and their attitudes underpinning these decisions
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