Online Program

Social aspects of sharing consumer genetic testing information online

Monday, November 4, 2013 : 10:45 a.m. - 11:00 a.m.

Amanda M. Dalia, MS, College of Communication, Boston University, Boston, MA
Catharine Wang, PhD, MSc, Boston University School of Public Health, Boston, MA
J. Scott Roberts, PhD, Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan 48109, MI
Sarah S. Kalia, ScM, CGC, Division of Genetics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA
Clara Chen, MHS, Data Coordinating Center, Boston University School of Public Health, Boston, MA
Robert C. Green, MD, MPH, Division of Genetics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA
With the rise of access to the Internet and mobile/digital platforms, people are increasingly using social media to share health information (Pew Research Center). However, little is known about whether sharing includes sensitive topics such as genetic information, which could have implications for privacy and discrimination. As part of an ongoing longitudinal study examining responses to consumer genetic testing from two companies, we report on those consumers who indicated sharing on social media networks, the types of networks, and predictors of sharing. Participants were surveyed at baseline, 2 weeks and 6 months following receipt of test results. Currently, 986 participants have responded to the 6-month survey. Overall, 6% of participants discussed their results on general social media networks (e.g., Facebook), 4% shared on health/disease-based social network sites (e.g., PatientsLikeMe), and 1.5% shared on both. Bivariate analyses were performed to examine demographic and psychosocial predictors of sharing. Those who shared on general social media sites tended to be younger (mean age = 43 vs. 47, p=.06) and were more surprised (p=.05) and happy (p=.02) with their results. Those who shared on health/disease-based sites tended to be female (73%, p=.06) and were more uncertain about the meaning of their results for their family (p=.02). Interestingly, having considerations about privacy of genetic information was not associated with sharing on either network. Survey results suggest that consumers may share across different networks for different purposes. Implications for health communications professionals will be discussed.

Learning Areas:

Communication and informatics
Public health or related research

Learning Objectives:
Describe the extent to which users of consumer genetic testing share their results with contacts on social networking services and health/disease-related websites. Discuss implications for public health/health communication professionals in strategically leveraging social media and online communications to provide education/support surrounding consumer genetic testing results.

Keyword(s): Genetics, Communication

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a healthcare communications professional with a Master of Science in public relations, seven years of industry experience, and also teach as an adjunct faculty member at the Boston University College of Communication.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.