Psychiatric Genetic Counseling: Don't Expect Easy Answers

Over the past 20 or so years, much has been learned about the heritability of various psychiatric illnesses. By 2003, the human genome had been entirely sequenced. Psychiatric geneticists are now in hot pursuit of specific genes underlying various psychiatric disorders.

Thus it should probably come as no surprise that psychiatric genetic counseling is getting under way as well. Jehannine Austin, Ph.D., an assistant professor of psychiatry at the University of British Columbia, made this announcement at the World Congress on Psychiatric Genetics in October (Psychiatric News, November 16, 2007).

Austin, it turns out, is one of the few persons in the United States and Canada who engage in psychiatric genetic counseling. So Psychiatric News contacted her, along with several others —Holly Peay, M.S., associate director of the genetic counseling training program at the National Institutes of Health; Christine Finn, M.D., a psychiatry instructor at Harvard Medical School and a medical geneticist; and Beth Sheidley, M.S., a psychiatric genetic counselor at New England Medical Center —to learn more about this burgeoning new field.

Various types of individuals seek such services, those experts said. Some have a family history of psychiatric illness and are concerned about their children developing it. Others have an affected child and wonder whether they should have more children because of the risks. Still others are affected themselves or have a spouse who is affected and worry about risk to their children. Unaffected siblings of affected individuals are also sometimes interested in learning what their chances of having an affected child are. And then there is the couple who, having learned that a child they are interested in adopting comes from a family with psychiatric illness, wants guidance on whether to proceed with the adoption.

In many instances, the counseling that these persons undergo helps them make informed decisions, Austin, Peay, Finn, and Sheidley indicated.

For example, Peay recently counseled a man whose wife had died from early-onset Alzheimer's disease. He was concerned that his teenage children might get early-onset Alzheimer's as well and wanted to have their DNA tested for the several genes known to cause this form of the disease.

Peay told the man, however, that if he had the DNA of his children tested, it wouldn't necessarily give him a yes or no answer, and even if it did,“ We couldn't prevent the disorder.” Peay also talked with him about his fears. The information and discussion “definitely helped him,” she said. “It was clear that he was just going to rush into DNA testing without a clear idea of what it could achieve or what the implications were.”

A “shockingly high number” of persons who come for psychiatric genetic counseling are afraid of having children because they have relatives with psychiatric illness, Austin said. Yet these persons tend to overestimate the risks, and explaining the real risks to them often eases their anxiety.

Finn described a case that illustrates this point. A woman whose father had schizophrenia was worried about her children getting the illness. Finn asked her what she thought the risk was. She said 50 percent, maybe even 90 percent. Finn told her that her own risk was only 10 percent and her children's even less—from about 1 percent to 3 percent. This information reassured her greatly, Finn said.

Nonetheless, only a handful of individuals are specializing in psychiatric genetic counseling, Austin, Peay, Finn, and Sheidley reported (see How to Find Genetic Counselors). The tools used, with a few exceptions, are pretty basic—traditional family-history taking, not genetic testing or prenatal diagnosis. And the challenges of conducting such counseling can be daunting, they said.