Few DTC Genetic Test Customers Share Results With Health Providers

By Lori Solomon, Editor, Diagnostic Testing & Emerging Technologies

While few direct-to-consumer (DTC) genetic testing consumers share their results with a health care provider, most who do are satisfied with the discussion of results, according to a study published in Annals of Internal Medicine. The study authors say that the decision to share results and satisfaction with the ensuing discussion are both likely tied to the consumer’s perception that their results can potentially affect their health.

DTC personal genomic testing remains controversial both because of questions surrounding its accuracy, as well as because of concerns about the consequences of the results, including customers’ ability to understand results, possible associated anxiety, and the possibility of greater, unnecessary health care utilization due to test results.

The Impact of Personal Genomics (PGen) is a large, longitudinal study of actual DTC personal genomic test users (23andMe and Pathway Genomics). Researchers from the PGen study group conducted an online survey before and 6 months after receipt of test results to understand consumer satisfaction with the testing experience; whether and how test results could be used to improve health; how results were understood and shared; and beliefs about the primary care providers’ understanding of genetics.

Based on 1,026 respondents, the researchers found that whether or not consumers discussed their results with health care providers, they were highly satisfied with their decision to obtain DTC personal genomic testing. Roughly 20 percent of conditions were designated as “elevated risk” on an individual participant’s report.

The survey revealed that 27 percent of respondents reported sharing their results with a primary care provider, while 8 percent report sharing their results with some other type of health care provider and 65 percent report not sharing results with any provider. The top categories of health care providers with whom results were shared include: physician assistants/nurses (n = 17); genetic specialists (n = 12); and obstetricians/gynecologists (n = 8).

At baseline, 63 percent of respondents reported they were planning to share their results with a primary care provider. However, at the 6-month follow-up, 27 percent reported having done so, and 8 percent reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider included that the results were not important enough (40 percent) and a lack of time (37 percent). Among respondents who did not report sharing their results with a provider, 8.5 percent had reservations about the results becoming a part of their medical record.

Among participants who did discuss results with their primary care provider, 35 percent were very satisfied with the encounter, and 18 percent were not at all satisfied. Those reporting dissatisfaction with the discussion, were the most likely to report that their PCP’s interpretation of results differed from the company’s interpretation. Provider discussions focused on actionability of the results or use in

care (32 percent), primary care provider engagement or interest (25 percent), and lack of PCP engagement or interest (22 percent).

“Research on predictors of patient satisfaction suggests that such discussions, to the

degree that they incorporate patient-centered questioning techniques, explanations, and health education and information sharing, can potentially improve patient satisfaction with the PCP interaction,” writes senior author Robert C. Green, M.D., from Brigham and Women’s Hospital (Boston). “The ways in which companies and their advocates promote and present DTC PGT may be a factor in how consumers view these services and may have an important (and perhaps negative) effect on patient–physician interactions.”

Several authors report financial ties to the diagnostics industry.