Helping Families and Fighting Stigma
Reprinted from "Stigma & Discrimination" issue of Visions Journal, 2005, 2 (6), p. 30-31
Genetic counselling is..
People usually only think of genetic counselling as something that applies to pregnancies where there is a chance the baby could have a condition such as Down syndrome. Genetic counselling is rarely thought about as something that might beneﬁt people dealing with mental illnesses such as schizophrenia or bipolar disorder. But it can be very useful for families affected by major mental illnesses—and can help ﬁght against the stigmatization of mental illness.
Genetic counselling is often regarded warily. This is understandable, because unfortunately, it has an unpleasant past. Its origins are tied to the birth of eugenics (i.e., controlled breeding of human beings), which involved many horriﬁc human rights violations. The forced sterilization of 2,800 people with mental and physical disabilities in Alberta between 1928 and 1970 is just one example.
A desire to avoid repeating the mistakes of the past, however, has helped modern genetic counselling develop into a profession governed by “non-directiveness.”2 This means that genetic counsellors will not make decisions for their clients, or advise them not to have children because they have a mental illness. Genetic counsellors believe that when their clients have all the information and support they need, they are the best people to make their own decisions.
Genetic counselling is a communication process. It deals with problems that involve an illness where genetics plays a role. Mental illnesses are “complex disorders,” which means that both genes and the environment affect the development of the illness.
We know that genes play a signiﬁcant role in schizophrenia, bipolar disorder, schizoaffective disorder and OCD, and a slightly smaller role in alcoholism, panic disorder and major depression.4 Genetic counselling for mental illness helps people understand the roles of both genes and environment in how the illness developed, and helps them make the best adjustment they possibly can to the illness in their family.
Women with mental illness who are pregnant or who want to become pregnant, may ﬁnd genetic counselling useful. The prospective parents may want to know the chances of the baby developing a mental illness, or they may want to talk about how medications might affect a developing baby.
The following individuals may also ﬁnd genetic counselling for mental illness useful:
People who have a mental illness and who want to know “why me?”
Parents of individuals who have a mental illness, who have felt guilty, wondering if they somehow caused the illness, or who were previously told that the illness was “their fault”
Brothers, sisters or children of individuals with a mental illness, who are afraid they might also develop it, or that they might ‘pass on’ the illness to their children
Each genetic counselling session is unique. Usually, the counsellor starts by helping the client work out what they want to achieve or to learn in the session. This can be very different from person to person. The counsellor will ask the client about their experience of the illness, and what appeared to cause or trigger it. The counsellor will ask about, and draw, the client’s family history. If the client would like to know what the chances might be for other family members to be affected with a mental illness, the counsellor will try to give this information. Counsellors will also help clients make decisions related to the counselling session by providing information and support, and by connecting clients with support groups. They also provide the opportunity to explore the impacts this new understanding might have.
How can genetic counselling help ﬁght stigma?
Fear of mental illness is one of the most signiﬁcant factors contributing to stigma, and uncertainty about what causes mental illness is one of the things that makes people afraid.
Helping families to understand the causes of mental illness will not only help to decrease guilt and anxiety, but will also help to demystify mental illness and increase the sense of personal control. We know that many people share their new knowledge of the causes of mental illness with friends and family, which helps to demystify mental illness within the community. Demystifying mental illnesses should decrease fear, and reduce avoidance and discrimination against people with mental illness and their families.
Genetic counselling is usually only offered to families affected by conditions that are caused entirely by genes (e.g., cystic ﬁbrosis or Down syndrome). Or, it is offered to families affected by diseases for which genetic tests are available (such as some kinds of breast and ovarian cancer).
Mental illnesses are not caused entirely by genes and there are no genetic tests for them. As a result, families affected by mental illness are not usually offered genetic counselling.
If, having read this article you are interested in genetic counselling, ask your doctor to make a referral for you at 604-875-2157.
About the Author
Jehannine holds a doctorate in neuropsychiatric genetics, is a certified genetic counsellor, and a clinical instructor in the UBC Department of Psychiatry. Through the South Fraser Early Psychiatric Intervention program, she works exclusively with families affected by mental illness. Jehannine plans to set up Canada’s first specialist genetic counselling service for mental health concerns
CBC. (1999, November 9). Alberta apologizes for forced sterilization. CBC News Online. Retrieved April 29, 2005, from CBC News website at cbc.ca/ cgi-bin/templates/view. cgi?/news/1999/11/02/ sterilize991102
Weil, J. (2003). Psychosocial genetic counseling in the post-nondirective era: A point of view. Journal of Genetic Counseling, 12(3), 199-211.
Gottesman, I.I. (2001). Psychopathology through a lifespan-genetic prism. American Psychologist, 56(11), 867-881.
Merikankas, K.R. & Risch, N. (2003). Will the genomics revolution revolutionize psychiatry? American Journal of Psychiatry, 160, 625-635.
Austin, J. & Honer, W. (2005). The potential implications of genetic counseling for mental illness. Clinical Genetics, 67(2), 134-142.