Considering genetic counseling about mental illness? Here’s what to expect

Considering genetic counseling about mental illness? Here’s what to expect

Genetic CounselingIf you have a personal experience with mental illness or a family member who does, you may have wondered if your children or children you might have in the future could develop mental illness too. Perhaps you’ve wondered what caused the illness or maybe you’ve felt guilty and blamed yourself.

You may want to know whether there are any genetic tests available to you or you’d like to understand what you can do to protect your mental health for the future. If any of these questions have crossed your mind, a genetic counselor can help.

It’s quite common for people to feel anxious about going to see a genetic counselor, and a large part of that anxiety comes from not knowing what to expect, and not being sure how to prepare for your genetic counseling appointment.

I see patients and their families with a variety of psychiatric conditions such as depression, schizophrenia and bipolar disorder. Below are some common questions I receive about genetic counseling.

  • It’s clear to me that experiences contributed to the development of my or my loved one’s mental illness, so how is genetic counseling relevant?

Despite the name, genetic counseling is not limited to discussing just the genetic aspect of conditions like mental illness. In fact, the counselor will talk with you about the role both genetics and our experiences play in the development of mental illness.

  • What good will it do to talk about the causes of mental illness?

First, talking about the causes of mental illness can be really helpful as the counselor can help with any guilt, blame or shame that you might feel about this. The genetic counselor won’t just talk with you about how mental illnesses develop, they can also talk with you about things that can be done to protect mental health for the future.

  • Will I be told that I shouldn’t have children?

No! A genetic counselor will provide you with information that can help with your decision about whether to have children, and will support you in making a decision that works for you and your values. Sometimes, seeing a genetic counselor reassures people who want to start a family but thought they shouldn’t. 

  • I’m the only person in my family with a mental illness or, I don’t have any information about my family history. Can genetic counseling still help?

Yes! Even if you are the only one in your family who has experienced mental illness, genetic counseling can help. While information about your family history can be helpful, not having it for some reason, such as being adopted, does not exclude you from genetic counseling, and does not mean that it won’t be beneficial for you.

  • I am not interested in genetic testing. Is genetic counseling still relevant?

You don't need to have genetic testing in order to benefit from genetic counseling. 

How to prepare for your genetic counseling appointment

  • Get as much information as possible about family members’ experiences with psychiatric disorders:
    • What diagnosis (or diagnoses) they received
    • What medication they took (if any)
    • Their approximate age when the illness started
    • If a relative was hospitalized for psychiatric problems or had a “nervous breakdown” it can be helpful to know more. Was your relative depressed or were they experiencing something like having odd beliefs or hearing voices? If you’re unable to get this information, the genetic counselor will still be able to help, but this additional background can be useful especially if you are interested in talking about chances for others in the family to experience similar issues.

You don't need to have genetic testing in order to benefit from genetic counseling.

  • Think about what your own experience tells you about things that might have contributed to the development of your illness, or your loved one’s illness. Also, think about things you’ve read and what others have told you about causes of mental illness, so you can talk about this with your genetic counselor.
  • Write down any questions you might have about causes of mental illness, chances for others to be affected and strategies for protecting mental health in the future.
  • If you are interested in talking about having children, think about which mental illnesses are the most important for you to know about, and, if possible, tell the counselor about that before your appointment. It can also be helpful to think about what you imagine the chances are that your child would be affected, and what chance, if any, you personally are willing to take.

If you would like to speak with a genetic counselor about your own experience with mental illness, or that of a loved one, you can connect with a genetic counselor in your area using NSGC’s “Find a Genetic Counselor” tool.

Jehannine Austin, Ph.D., CGC is president-elect of the National Society of Genetic Counselors and is an associate professor in the Departments of Psychiatry and Medical Genetics at the University of British Columbia in Vancouver.

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