An original research manuscript and a corresponding editorial published recently in Annals of Internal Medicine analyze interactions of patients with their primary care providers (PCP) regarding their direct to consumer (DTC) genetic testing results. Van der Wouden et al. found that out of 1026 respondents, 277 discussed their results with their PCP. Of those, 35% were very satisfied while 18% were not at all satisfied with the interaction (the remainder were “somewhat” satisfied). Those who were very satisfied were more likely to report that their provider was willing to discuss their test results (83.7% compared to 7.8% of not satisfied) and use the results in medical care (67.4% vs. 1%). The study, however, does not report any health care provider perspective on these interactions.
The editorial piece by Burke and Trinidad focuses on problems with DTC testing, comparing them with tests such as whole body scans, stating “They are tests that deliver uncertain information and create patient expectations that may align poorly with evidence; clinical priorities; or, in some cases, the patient's best interests.” While they cite the numbers for the customers who were not at all satisfied with their PCP interaction in the van der Wouden study, there is no mention of those who were satisfied. They conclude the lack of satisfaction suggests that the DTC companies create unrealistic expectations of the health care system. They even go so far as to say that DTC companies have been able to “[externalize] the dissatisfaction consumers feel when their experience falls short of marketing promises”, presumably deflecting customer dissatisfaction onto health care providers. This statement is surprising given the van der Wouden study showed that the customers who discussed their results with their PCP expressed the most satisfaction with the test overall (as compared to those who consulted with another health care provider other than the PCP, or did not consult with a health care provider at all). Not a single customer in this group reported being completely dissatisfied with their decision to obtain the DTC test.
Both the original article and the editorial raise questions around the customer expectations of DTC testing, and around the responsibilities and capabilities of healthcare providers in understanding and interpreting genetic test results. The conclusions differ markedly. Regardless, there is a need to address the disconnect in patient/customer expectations and the responses of healthcare providers as genetic testing becomes more prevalent in precision medicine.