NEW YORK – A first-of-its-kind clinic specializing in psychiatric genetic counseling is reportedly closing this year after more than a decade, shining a spotlight on the challenges genetic counselors face untangling themselves from the healthcare industry and consumers' excitement over genetic testing.
The Adapt Clinic was founded in 2012 by Jehannine Austin, a professor in the psychiatry and medical genetics departments at the University of British Columbia. The clinic, housed at the British Columbia Women's Hospital in Canada, operates on the principle that genetic counselors can help people diagnosed with mental illness or concerned about it parse through genetic and environmental risk factors, understand how these factors may contribute to developing a disorder, and use that information to manage mental wellness.
The clinic's impending closure "was really perceived as a loss for the entire field of genetic counseling because they've been such trailblazers," said Laura Hercher, director of research within the human genetics program at Sarah Lawrence College in Bronxville, New York, and cofounder of the DNA Exchange, a blog for genetic counselors, where the clinic's founder first posted the news.
Genetic counselors at the Adapt Clinic consult with individuals who have psychiatric conditions or a family history of mental illness and discuss their risk factors and how to manage them. It can be particularly difficult for patients to understand the causes of psychiatric disorders, a catch-all term for a broad range of conditions spanning schizophrenia, bipolar disorder, and depression. These are complex disorders, involving an interplay between genetics, environment, and events that a patient experiences over their lifetime, and often, there isn't a clear-cut explanation for why a condition might manifest in an individual.
"In the absence of really good explanations for why somebody has a psychiatric condition, people will make up their own explanations," Austin said. Unfortunately, those explanations can involve erroneously blaming themselves for their own condition. "The explanations that people create tend to invoke things like guilt, blame, shame, fear, or stigma, or all of the above," they added.
The Adapt Clinic's services were free to patients in Canada's British Columbia province through the Provincial Health Services Authority. The Provincial Health Services Authority did not respond to a request for comment on the status of the clinic, but Austin said the genetic counselors consulting for the clinic will transition to providing services in the general genetics clinic.
The Adapt Clinic framework
While numerous genes have been implicated in psychiatric disorders, these conditions aren't caused by genetics alone. Genetic predisposition to mental illness is just one factor, and how people manage their social networks, stress, sleep, and exercise habits, and even the hobbies they partake in, may serve as "protective factors" providing support.
Those are the types of discussions happening at the Adapt Clinic, Austin explained. The process starts with genetic counselors taking a detailed family history from patients over the phone, before the formal appointment, to assess their inherited risk. The formal 90-minute genetic counseling session then takes place in person or via telehealth, during which counselors discuss patients' concerns and possible solutions. About a month after the visit, patients receive a follow-up call, during which they can request another appointment if they have additional questions. Only about 5 percent of people needed a second appointment, according to Austin.
Since the Adapt Clinic was the first of its kind, Austin and colleagues created the genetic counseling framework from scratch based on a significant body of research.
Austin has studied psychiatric genetic counseling, its potential benefits, and patients' interest in the service for more than a decade. In a small pilot study in 2008, for example, parents of patients with psychiatric illnesses indicated that a genetic counseling session was useful and assuaged concerns, in part because many learned the risk that their relatives might have the same diagnosis was actually lower than expected. In separate studies of patients with mental illnesses, investigators found that patients reported leaving counseling appointments feeling less shame and more empowered to manage their illness.
A key component of the Adapt Clinic was that patients could be referred to it by a psychiatrist or primary care doctor, but a referral wasn't required. Patients could reach out directly to the clinic and schedule a visit, which Austin said was important, since not everyone has a trusted physician.
Austin also emphasized that while genetic counseling is often thought of as going hand in hand with genetic testing — with counselors primarily responsible for translating genetic information to patients and families in a digestible way — that's a misunderstanding of the field. Ultimately, genetic counselors help patients understand the role of genetics in their health, interpreting risk and what they can do in everyday life to manage it. That can be done based on a patient's inherited risk and family history, regardless of whether they have undergone testing. This is particularly helpful when managing patients with psychiatric conditions with complex risk factors, Austin said.
When the Adapt Clinic closes, the patients who will remain eligible for Provincial Health Services Authority-backed genetic counseling are those who require help interpreting genetic test results, according to Austin. That largely excludes patients with psychiatric conditions or concerns since genetic testing isn't typically done on this population as part of the diagnostic work-up.
Put to the test
During its decade in operation, the Adapt Clinic became the model for psychiatric genetic counseling programs, according to Hercher at Sarah Lawrence. Its closure is disappointing, she said, particularly at a time when rates of anxiety and depression are rising. But Hercher remains optimistic that the specialty will grow in the coming years, perhaps propelled by advances in genetic testing.
While Hercher also highlighted the critical role genetic counselors play outside the context of genetic testing, she acknowledged that these programs can be difficult to set up since they aren't always covered by insurance. In fact, in the US, genetic counseling isn't covered under Medicare. And when commercial insurers do cover the service, it might be only covered when a patient has received a genetic test or when a physician has made a referral for a genetics consultation.
It's possible that, as genetic testing becomes more integrated into psychiatric care, it would push the industry to invest in the relevant counseling services, Hercher suggested. That is, if genetic tests become more widely used within psychiatry, genetic counselors will be needed to interpret the results for patients and psychiatrists.
As it stands, however, genetic testing isn't a routine part of psychiatric care, said Jordan Smoller, a psychiatrist, geneticist, and director of the center for precision psychiatry at Massachusetts General Hospital. In practice guidelines for managing psychiatric conditions, doctors aren't recommended to order genetic tests to aid in diagnosing patients or assessing their risk of developing a disease.
That could change. For example, there has been debate over whether genetic testing would be useful for patients with schizophrenia, but professional societies vary in their suggestions.
If genetic testing were implemented in psychiatric care, that's one area where there would be a clear need for genetic counseling, Smoller said. He added that there's already a need for counseling in dispelling misconceptions about the causes of psychiatric illness. Some patients may not understand the role family history plays, while others overvalue genetics and see inherited risk as a foregone conclusion. Smoller also noted there is growing interest in exploring the role of genetics within psychiatry, given the complex interplay between genetics and environmental factors in mental illnesses. "That's an area that needs a lot more study," he said. "It's quite different from a highly penetrant rare variant. It's a probabilistic risk factor."
There's emerging research on polygenic risk scores for psychiatric conditions such as schizophrenia, noted Leslie Ordal, a genetic counselor who offers psychiatric genetic counseling and other services at Grey Genetics, a telehealth genetic counseling company in the US.
Those polygenic risk scores, if validated and adopted, could help guide management of patients with mental health conditions, but they can also be used or interpreted incorrectly, making genetic counselors an important intermediary.
"It's another opportunity to raise the profile of psychiatric genetic counseling as these types of tests become available," Ordal said. As the specialty grows, she said she sees potential for psychiatric genetic counselors to forge partnerships with psychiatrists, geneticists, and primary care doctors to create a referral pathway.
'Go for it'
Today, Ordal sees patients who have been diagnosed with a mental illness and who want to learn about the causes of their condition and how to manage it. She also sees individuals who have a family history of mental illness and want to learn about family planning and the risk of passing a condition down to their children.
"It's definitely a small and emerging specialty in genetic counseling," Ordal said, noting that patients pay out of pocket for a psychiatric genetic counseling consultation with her.
While psychiatric genetic counseling is largely not covered by insurance, it has the potential to save money for healthcare delivery organizations, according to Austin, though it may not necessarily generate revenue. "What we need is more studies demonstrating [health] economics," they said, noting that the findings of such studies will vary based on the different funding structures within countries.
In a study published last year, Austin and colleagues surveyed decision-makers at large genetic centers in the US and Canada about drivers and barriers to creating new genetic counselor positions, including for psychiatric genetic counseling. Researchers characterized the process for creating such positions as "reactive," driven by physician referral patterns, which tended to hinge on genetic testing needs and availability of clinical practice guidelines.
Even though the Adapt Clinic may be winding down, Austin urged others interested in studying or starting psychiatric genetic counseling programs to do so, noting that there are still patients in need of such services. "There's no reason for the closure of this one clinic to inhibit anybody else," they said. "Anybody that's considering this, interested in this, go for it. Please."