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Consumer Perceptions May Influence Satisfaction With Physician Discussion of DTC Genetic Testing Results

NEW YORK (GenomeWeb) – Consumers' expectations may color whether or not they are satisfied when they share and discuss their direct-to-consumer genetic testing results with their doctors, a new survey has found.

As they reported today in the Annals of Internal Medicine, researchers from the Impact of Personal Genomics Study group surveyed nearly 2,000 people who'd undergone DTC personal genetic testing to ask about their general experience and their specific interactions with their primary care providers (PCP).

While more than half of respondents said that they wanted to discuss the findings with their doctor prior to receiving their testing results, only 27 percent actually did so within six months of receiving them. Of those who shared their results with their PCP, 35 percent were very satisfied with the encounter, while 18 percent weren't satisfied at all.

"[An i]mportant contributor to dissatisfaction may be the differences between consumer expectations and PCP training with respect to how DTC PGT results should be integrated into care," the team led by Brigham and Women's Hospital's Robert Green wrote in the paper. "Individuals who seek DTC PGT probably believe it has value, at least as it pertains to their particular goals in testing "

Green and his colleagues surveyed 1,249 23andMe customers and 589 Pathway Genomics customers as part of the PGen Study before viewing their results as well as two weeks and six months after receiving them. A number of respondents were lost to follow up. They asked the participants whether they intended to share their results with their PCP and, later, whether they did as well as why they did or did not. In addition, they asked them whether they were satisfied with their interaction with their PCP and why or why not.

Before viewing their results, 62.1 percent of the respondents said they planned to discuss their results with a healthcare provider and 55.6 percent planned to discuss them with their PCP. However, at the time of the six month post-results survey, 27 percent of respondents said they'd shared their results with their PCP and 8 percent with another healthcare provider.

Of those who hadn't shared their results with a healthcare provider, 41.6 percent said they didn't think the results were important enough to share, 8.5 percent had concerns about their results becoming part of their medical records, and 38.4 percent said they just hadn't had the time.

Meanwhile, those who did share their results were more likely to be satisfied with their decision to undergo DTC genetic testing and to say that their results could be used to improve their health.

However, only about a third of the respondents who did share their results with their PCP were very satisfied with that encounter. Some respondents who shared their results said their doctor was interested in the data and how it could be used, but others said their doctor didn't seem interested or lacked training in genetics.

The 18 percent of respondents who weren't satisfied at all with their physician encounter were more likely to report that their PCP's interpretation of their results differed from that of the testing company. These dissatisfied respondents were more likely to trust the company's interpretation. At the same time, respondents who were satisfied with their physician encounter, but whose doctors' interpretations differed from the testing company's were likely to trust both equally.

The perception — whether true or not — that a physician lacks genetics training can color the doctor-patient relationship, Green and his colleagues noted, adding that the loss of trust can lead to patient dissatisfaction.

At the same time, the researchers argued that some DTC genetic testing customers might have high expectations, and that those expectations may further be influenced by the DTC testing process itself, such as when the company identifies a disease risk and instructs the customer to discuss a prevention plan with his or her doctor.

"Some patient dissatisfaction may stem from the disconnect between how companies market (and their customers perceive) the utility of DTC PGT and how the medical community describes (and its members perceive) it," Green and his colleagues wrote.

In a related editorial in the Annals of Internal Medicine, the University of Washington's Wylie Burke and Susan Brown Trinidad said that professional organizations and societies should consider developing resources about DTC genetic testing and other health products marketed to consumers.

Though they said that "professional societies should not need to take on this educational task, and physicians should not spend valuable time in the clinical encounter deflating a misguided marketing message," they did add that "DTC genetic testing is not the first (or the last) health product to generate unrealistic hopes. The health system may be the best source of authoritative advice to counter the deceptive appeal of genetic risk prediction."