A new survey from the Genetics and Public Policy Centre at Johns Hopkins University has found that customers of direct-to-consumer (DTC) genetic testing companies are generally satisfied.
Researchers sought to understand the motivations, attitudes, responses and understanding of customers to further inform ongoing debate about the regulation of DTC genetic testing companies (see previous news). A random sample of 1,048 US customers of the three major companies offering personal genomics DTC (23andMe, deCODEme and Navigenics) were surveyed online between June 2009 and March 2010.
Early adopters of DTC genetic tests (who tend to be affluent and well educated) indicated that they were generally satisfied with the testing services. The top reason cited for pursuing testing was curiosity (94%), though 77% also pursued testing to help improve their health. Interestingly, 58% said they learned information that would help improve their health, and as a result of testing, 34% said they were being more careful about their diet and 14% were exercising more.
Despite the complexity of the information, and fears that people would be unable to understand their results, 88% of customers reported that their risk results were easy to understand, and only around 5% misinterpreted two example risk reports presented in the survey. Regarding regulation, around two-thirds of participants felt that such tests should be available without government oversight, although consumer protection agencies (such as the Federal Trade Commission in the US) should monitor companies’ claims for scientific accuracy.
This study provides long-overdue evidence that consumers are satisfied with DTC genetic testing services, and are generally able to interpret their results. It also indicates that there may be direct health benefits resulting from the tests in terms of behaviour modification.
Although long term follow-up is needed to investigate whether the behavioural changes cited are permanent or transitory, this survey indicates not only the absence of harm caused by DTC genetic testing services, but also the possibility of benefits. While it is unclear whether the results from these early adopters are broadly applicable to the general public, nonetheless the findings of this study concord with the PHG Foundation’s own recommendations regarding the regulation of DTC genetic services (see previous news).