More patients of NorthShore University HealthSystem will soon be able to get genetic testing through their primary care doctors, the health system said this week, after wrapping up a year-long pilot project that was considered one of the largest of its kind in the country.
Over the past year, NorthShore partnered with health care technology company Color to test nearly 10,000 primary care patients at about half of the system’s 30 primary care sites, located mostly in the north suburbs. NorthShore now plans to expand the availability of that testing to all its primary care practices starting Jan. 22, including at its newly acquired Swedish Hospital in Ravenswood.
The testing is meant to help patients determine whether they’re at higher risk of developing certain conditions such as breast cancer, colorectal cancer and heart disease. The test results can also be used to help patients find the most effective pain and depression medications based on their genetics. The test sequences a person’s whole genome, or complete set of DNA.
During the pilot program, the tests were free to patients. Now that the pilot is over, patients will pay $175 for the optional testing, unless their health insurance plans cover it, many of which do not. The testing is available to patients ages 18 and older.
Though a number of hospital systems perform genetic testing on certain patients, such as those with cancer, the idea of offering broad testing as a part of routine primary care is still relatively new. NorthShore is one of at least a handful of hospital systems across the country that have seized on the idea. Unlike many popular, direct-to-consumer tests such as 23andMe, the Color tests offered by NorthShore can be used in medical decision-making.
Color, based in California, is working on a similar program with South Dakota-based Sanford Health, and, separately, Pennsylvania-based Geisinger health system also offers genetic testing to primary care patients.
Some have criticized broad genetic testing, questioning the usefulness of information gleaned from such tests and saying they could lead to unnecessary care and costs. It’s still unknown how much certain genetic mutations might boost a person’s risk of getting a disease.
But others say it’s the future of primary care.
“Our goal with all of this is to be able to identify and proactively intervene and prevent illness in a way that delivers better care to our patients, allows them to more actively participate in their care and have better peace of mind,” said Kristen Murtos, chief administrative and strategy officer at NorthShore.
During the pilot phase, about 30% of patients who were offered testing tried it, she said.
Patients had blood samples sent to Color and received the results a few weeks later. Patients were offered the chance to speak with genetic counselors and were connected with specialists, if they had certain genetic mutations. The test results were integrated into patients’ electronic medical records, so all their NorthShore doctors could take them into consideration when providing care.
About 10% of patients who took the tests had results showing genetic mutations that could put them at higher risk of developing cancer, according to NorthShore. About 99% of patients had results indicating that one type of medication might be better than another for certain conditions.
Elyse Azriel, 27, of Bucktown, learned through NorthShore’s testing that she had Lynch syndrome, an inherited condition that increases a person’s risk of developing several types of cancers. At first she was hesitant to take the test because she had already done a direct-to-consumer genetic test. But her primary care doctor brought up the Color test during her annual physical exam last year and recommended she get it because of a family history of cancer.
When her results came back positive for Lynch syndrome, she received genetic counseling and her doctor helped connect her to specialists throughout NorthShore. She’s already undergone several cancer screenings and will continue to be screened regularly.
“I feel fortunate I found this out so early in life, because if I had awaited too late to do some of these screenings, I might have already had cancer,” Azriel said. She works as a rehabilitation counselor for people with disabilities, but is interested in a career in genetic counseling after her experience.
The NorthShore program is helping to answer some of the questions that remain about broad genetic testing, said Caroline Savello, vice president of commercial for Color. Some, for example, have wondered about the emotional impact of telling patients they’re at higher risk of certain diseases and whether it’s fair to place another task upon already-busy primary care doctors.
But about 82% of about 1,500 patients who underwent testing through NorthShore said they’d recommend it to others, according to Color.
“I think programs like NorthShore’s prove those are all manageable questions,” Savello said.
Some experts say they expect to see more primary care doctors offering genetic counseling in the future. It might take some time because there aren’t enough trained medical experts to analyze and communicate genetic results to patients, said Dr. Maximilian Muenke, CEO of the American College of Medical Genetics and Genomics. But he believes that once it does become more widely available, it will improve patient care.
“Eventually, all of us will have, somewhere in a database, our own genomes,” Muenke said.
