Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing
Direct-to-consumer genetic testing has generated speculation about how customers will interpret results and how these interpretations will influence healthcare use and behavior; however, few empirical data on these topics exist. We conducted an online survey of DTC customers of 23andMe, deCODEme, and Navigenics to begin to address these questions. Random samples of U.S. DTC customers were invited to participate. Survey topics included demographics, perceptions of two sample DTC results, and health behaviors following DTC testing. Of 3,167 DTC customers invited, 33% (n = 1,048) completed the survey. Forty-three percent of respondents had sought additional information about a health condition tested; 28% had discussed their results with a healthcare professional; and 9% had followed up with additional lab tests. Sixteen percent of respondents had changed a medication or supplement regimen, and one-third said they were being more careful about their diet. Many of these health-related behaviors were significantly associated with responses to a question that asked how participants would perceive their colon cancer risk (as low, moderate, or high) if they received a test result showing an 11% lifetime risk, as compared to 5% risk in the general population. Respondents who would consider themselves to be at high risk for colon cancer were significantly more likely to have sought information about a disease (p = 0.03), discussed results with a physician (p = 0.05), changed their diet (p = 0.02), and started exercising more (p = 0.01). Participants’ personal health contexts—including personal and family history of disease and quality of self-perceived health—were also associated with health-related behaviors after testing. Subjective interpretations of genetic risk data and personal context appear to be related to health behaviors among DTC customers. Sharing DTC test results with healthcare professionals may add perceived utility to the tests.
KeywordsDirect-to-consumer Genetic testing Survey Risk perception Health behavior
This study was supported by the National Human Genome Research Institute (1R21HG004865-02). The authors would also like to thank Gail Javitt, JD, MPH, the staff at 23andMe, Navigenics, and deCODEme, and the study participants for their roles in this work.
- 23andMe. 23andMe receives funding from the national institutes of health to evaluate web-based research on the genetics of drug response. in 23andMe. Available at https://www.23andme.com/about/press/20101216/.
- Bloss, C. S., Darst, B. F., Topol, E. J., & Schork, N. J. (2011). Direct-to-consumer personalized genomic testing. Human Molecular Genetics. epub ahead of print.Google Scholar
- Coriell Personalized Medicine Coalition. (2011). “Sample accounts”. Webpage http://cpmc.coriell.org/Demo/DemoPeople.aspx Last visited December 17, 2011.
- Croyle, R. T., & Lerman, C. (1999). Risk communication in genetic testing for cancer susceptibility. Journal of the National Cancer Institute Monographs, 25, 59–66.Google Scholar
- Gollust, S. E., Gordon, E. S., Zayac, C., Griffin, G., Christman, M. F., Pyeritz R. E., et al. (2011). Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. Public Health Genomics. epub ahead of print.Google Scholar
- GPPC (2011). DTC table. Genetics and public policy center. Available from http://www.dnapolicy.org/resources/DTCTableAug2011Alphabydisease.pdf.
- Haga, S. B., Carrig, M. M., O’Daniel, J. M., Orlando, L. A., Killeya-Jones, L. A., Ginsburg, G. S., et al. (2011). Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. Journal of General Internal Medicine., 26(8), 834–840.PubMedCrossRefGoogle Scholar
- Hilgart, J., Phelps, C., Bennett, P., Hood, K., Brain, K., & Murray, A. (2010). “I have always believed I was at high risk…” The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments. Familial Cancer, 9(3), 469–477.PubMedCrossRefGoogle Scholar
- Kutz, G. (2010). Direct-to-consumer genetic tests: misleading test results are further complicated by deceptive marketing and other questionable practices. Congressional Testimony. July 22, 2010. http://www.gao.gov/new.items/d10847t.pdf.
- Leighton, J. W., Valverde, K., & Bernhardt, B. A. (2011). The general public’s understanding and perception of direct-to-consumer genetic test results. Public Health Genomics epub ahead of print.Google Scholar
- Marteau T. M., French, D. P., Griffin, S. J., Prevost, A. T., Sutton, S., Watkinson, C., et al. (2010). Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database of Systematic Reviews, (10).Google Scholar
- Sivell, S., Elwyn, G., Gaff, C. L., Clarke, A. J., Iredale, R., Shaw, C., et al. (2008). How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. Journal of Genetic Counseling, 17(1), 30–63.PubMedCrossRefGoogle Scholar
- van Dijk, S., Otten, W., Zoeteweij, M. W., Timmermans, D. R., van Asperen, C. J., Breuning, M. H., et al. (2003). Genetic counselling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment. British Journal of Cancer, 88(11), 1675–1681.PubMedCrossRefGoogle Scholar
- van Dijk, S., Timmermans, D. R., Meijers-Heijboer, H., Tibben, A., van Asperen, C. J., & Otten, W. (2006). Clinical characteristics affect the impact of an uninformative DNA test result: the course of worry and distress experienced by women who apply for genetic testing for breast cancer. Journal of Clinical Oncology, 24(22), 3672–3677.PubMedCrossRefGoogle Scholar