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Victoria Maxwell was no stranger to mental illness when she was diagnosed with bipolar disorder, anxiety, and psychosis at age 25. Her mother had bipolar depression, and when Maxwell was a child she remembers her mom as anxious and depressed, sometimes to the point of feeling suicidal. “I walked around on eggshells so I didn’t set my mother off,” she says. Soon after Maxwell received her own diagnosis, she was hospitalized for running down the street naked during a period of psychosis. She was eventually hospitalized three more times, and says she struggled to come to terms with the fact that she developed a mental illness like her mother. “When I was hospitalized, I really didn’t accept the illness,” she says. “It took almost five years for me to accept it.”
Maxwell, now 52, created a one-person show about her experience titled That’s Just Crazy Talk — A Story About Family, Secrets, and Stigma. She was performing her show at a research conference when she was introduced to Dr. Jehannine Austin, a genetic counselor and the founder of the ADAPT Clinic at the B.C. Women’s Hospital and Health Centre in Vancouver, British Columbia. The ADAPT Clinic is the first clinic in the world to provide psychiatric genetic counseling to people living with a diagnosis of mental illness, or people who believe they are at risk for one.
Nearly one in five adults in the United States lives with a mental illness, according to the National Institute of Mental Health. Although there is no genetic test that can diagnose or predict a person’s risk for mental disease, researchers acknowledge that mental health conditions are driven by a combination of genetic and environmental factors. People with a family history of mental illness may wonder if they are destined to inherit the same one they’ve watched a parent or sibling live with, or if it will show up in their children down the line. Psychiatric genetic counseling is meant to help people navigate that uncertainty.
Austin has spent the last 16 years focused on psychiatric genetic counseling, which was motivated by her own family history of mood, anxiety, and psychotic disorders. At the start of her career she was studying gene variations that put people at risk of developing schizophrenia. “My family was asking me questions about my research, wanting to know is schizophrenia was genetic, and if so, what it would mean for me or my brother,” she says. “My PhD hadn’t given me the language to take what I was learning and make it useful or meaningful to my family”.
Austin realized that making the science of genetics and mental illness more accessible to her relatives could also benefit other people with similar circumstances. So she decided to train to become a genetic counselor — a health professional who helps people understand their risk for inherited medical conditions. After running a small pilot study in 2008, Austin discovered that people who received genetic counseling for mental health disorders said they gained a better understanding of the causes of psychiatric illness and felt less concerned about their future. She launched the ADAPT Clinic in February 2012.
People with a family history of mental illness may wonder if they are destined to inherit the same one they’ve watched a parent or sibling live with, or if it will show up in their children… Psychiatric genetic counseling is meant to help people navigate that uncertainty.
When a person visits ADAPT, a genetic counselor works with them to collect a detailed family history of mental illness going back three generations. Based on what’s learned, people are provided with evidence-based information about the possible cause of their respective mental illness — if they have a current diagnosis — and how to treat or prevent it. Austin says counselors often call upon an analogy of a “mental illness jar” which is used to explain how genetic and environmental factors work together to “fill up the jar” and cause an episode of mental illness. For example, a childhood head injury, stressful life events like divorce or a death in the family, or the use of certain drugs are all considered risk factors.
Finally, the counselor discusses strategies people might use to protect their mental health, like sleep, nutrition, exercise and social support networks. They also offer guidance for how to communicate risk for other family members, like existing or potential children. “We use the understanding of what causes mental illness as a framework to have conversations with patients about how they might be able to better [prepare] for the future,” says Austin.
“We’re not here to replace the role of a psychiatrist,” she adds. “Instead we’re…helping people deal with any guilt, shame, or stigma around why they might have a mental illness.”
Some medical professionals have hesitations over the value of psychiatric genetic counseling, for a few reasons. Predicting a person’s risk for mental illness is a difficult process: according to a 2006 paper in Harvard Review of Psychiatry, symptoms of mental illness can sometimes be less tangible than symptoms of a chronic physical illness. “Psychiatric symptoms are subjective, the symptoms of psychiatric disorders overlap, and the line between mental illness and normality can be blurry,” the authors write. “Because of these ambiguities, it’s often doubtful who is at risk and how great the risk is.”
Even though the field has grown since then, Dr. Christine T. Finn, one of the authors on the 2006 paper, says she still believes that there are certain challenges for psychiatric genetic counseling. “I think one issue is that we haven’t identified a specific gene or genes that can be conclusively linked to mental illness,” she says. “There’s also the fact that patients may say they have a family history of a disorder but they have no medical records to validate those diagnoses.”
Studies on psychiatric genetic counseling are also mostly small, though positive. In a 2018 study published in the Journal of Genetic Counseling, researchers interviewed 10 people with a diagnosed mental illness who had undergone psychiatric genetic counseling. The men and women all described their experience as supportive and informational. Specifically, people said they felt like they gained a new perspective of the cause and management of their mental illness, and felt reduced feelings of shame, blame, and guilt. Another study from 2014 published in the journal Clinical Genetics analyzed the impact of psychiatric genetic counseling among 68 people who visited the ADAPT Clinic in its inaugural year of operation. Receiving genetic counseling was associated with increased levels of feeling “empowered” one month after the counseling session.
Since launching the clinic, Austin has trained providers across the world on how to provide psychiatric genetic counseling. Another private clinic providing psychiatric genetic counseling recently launched in San Francisco, and several clinics are aimed to launch in the United Kingdom.
Maxwell says that after meeting Austin following her one-woman show, she was intrigued by the idea of genetic counseling and decided to sign up for ADAPT. “I knew I wasn’t to blame for my mental illness, but I still felt like I could use some more information to really make sense of it,” she says.
Reviewing her family tree helped Austin realize just how many of her family members dealt with similar mental health conditions. “Before the counseling, I felt alone because I’m an only child and so I thought this was something that just impacted my mom and myself.”
The counseling sessions have also helped her cope with her own disease. “When I am struggling, I now think, ‘this is okay because this is something that has been part of my heritage for awhile,’” she says. “It’s not necessarily something that I want to continue or perpetuate, but the counseling gave meaning to my illness and gave it a sense of place.”