Risky Business: Risk Perception and the Use of Medical Services among Customers of DTC Personal Genetic Testing

Abstract

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.

Primary care patients’ views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study

“…African Americans are represented more highly in our sample than the general US population (12.6 % per US Census website) and participants generally had lower education levels than other studies of DTCGT (Bloss et al 2011;Kaufman et al 2012;McGowan et al 2010;O'Daniel et al 2010). Recruiting from an urban primary care office may have contributed to a more diverse sample than other early studies of this testing, including those of early users (Kaufman et al 2012;McGowan et al 2010). Our participants were not early users or adopters, as none had taken a DTC genetic test prior to the study.…”

“…Kaufman et al 2012 is one of the few studies to assess the impact of DTCGT on health behaviors of actual users (Kaufman et al 2012). Via an online survey, they explored how consumers interpreted risk information and how their interpretations influenced their healthcare.…”

Knowing your genes: does this impact behaviour change?

“…There are some examples in the literature investigating the effect of DTC testing on behaviour change (Table 1). Kaufman et al carried out an online survey of DTC customers of 23andMe, deCODEme and Navigenics (19) . A random selection of customers were invited to take part with 33 % completing the survey (n 1048).…”

“…Furthermore, a change in health anxiety was reported by 24·6 % of consumers, of which, 85·3 % were a reduction. A major strength of this survey and the one conducted by Kaufman et al (19) was the fact that they were conducted on real-life DTC consumers, rather than those who received the genetic testing free or at a reduced rate. This is in contrast to a study conducted by Bloss et al who recruited employees from health and technology companies who agreed to purchase the Health Compass at a discounted rate (21) .…”

Promoting healthy dietary behaviour through personalised nutrition: technology push or technology pull?

“…Meanwhile, there is a growing body of evidence for the effectiveness of tailored feedback in bringing about healthy behaviour change (3)(4)(5)(6) . Surveys of D-T-C services have suggested that they are effective in producing healthy behaviour change in approximately one-third of users (7)(8)(9)(10) . Awareness of D-T-C genetic tests is increasing among consumers (11) .…”