Pathway Genomics describes its array of genetic tests as “empowering” to both patients and their doctors, enabling them to engage in an open dialogue about the patient’s health.
That’s a wonderful vision, but a growing body of evidence suggests that many primary care doctors are unwilling or unable to communicate with their patients about their genetic test results. That’s particularly true when the patient ordered the test from a direct-to-consumer genetics company like 23andMe.
The latest report from the Impact of Personal Genomics Study Group found that 18% of patients were “not at all satisfied” with their experience when they shared their results with a physician. More than a quarter of them did not feel that their primary care doctor understood genetics well enough to properly advise them.
The study includes some jarring and revealing anecdotes from patients. One person reported that their primary doctor “backed away from the report like it was something to be afraid of.” Several shared that their appointment felt too rushed (it’s not unusual for doctors to schedule patient visits in 10-15 minute intervals). In one case, a doctor informed a patient that this brand of “saliva testing” was “unreliable and a waste of money.”
Meanwhile, the vast majority of patients reported that they were satisfied with their decision to obtain a genetic-to-consumer genetic test. More than 90% said that at least a few of the results could be used to improve their health.
The researchers recruited 1,026 people who had ordered a genetic test from 23andMe, the well-known direct-to-consumer genetics company, as well as from Pathway Genomics. Just over a quarter (277) of the participants–shared their results with a primary care doctor within six months of getting the test.
The Obama administration has called for a new era of “personalized medicine,” which relies on collecting a vast amount of genetic information from American volunteers to bolster the development of genetics-based treatment. But amid all the hype, what’s rarely discussed is the skepticism among health providers who don’t see much value in genetic tests.
The skepticism is justified, in some cases, but it also results from a lack of education. Many doctors are not qualified to understand and make sense of genetic test results. Medical schools did not pay much heed to genetics until relatively recently (The Human Genome Project, an international effort to determine the sequence of the human genome, was only completed in 2003.)
Medical geneticist Robert Green, one of the authors of the study, says some doctors have a legitimate case to make that genetics is still early, and not yet really useful for the majority of their patients. Studies have also found that most patients don’t actually change their behavior for the better once they learn about a genetic predisposition to a disease. But he also argues that primary care physicians shouldn’t simply ignore genetics.
“Patients are confronting the reality of their own DNA,” he explains. “What a great opportunity to seize on something that is meaningful to that patient and turn it into a teachable moment.”