The UW Genetic Medicine Clinic, which serves patients with known or suspected genetic conditions, celebrated its 50th anniversary in 2009. The clinic specializes in cancer genetics, cardiovascular genetics, hereditary connective tissue disorders, neurogenetics, hereditary skin disorders and familial chronic diseases that appear in adults.
“There are probably only about five clinics nationwide that have a comparable range of expertise, of conditions that they see,” says clinic director Fuki Marie Hisama, associate professor of medicine.
Robin Bennett, says Hisama, is “the pillar of the clinic.” Bennett, who serves as clinic co-director as well as a genetic counselor, was the former president of the National Society of Genetic Counselors, and is known nationwide for her expertise. Here she answers a few questions about her field and the patient experience.
How did you get into genetic counseling?
I went to Mercer Island High School and one of my fabulous biology teachers, Bill Tougaw, talked about this new field: genetic counseling. I wanted to be a genetic counselor from that moment on. I did a job shadow with three people at UW Medicine, and I wanted to come work here. I’ve been at the clinic 25 years.
What are some misconceptions about genetic counseling?
One is that you should only visit if you’re planning a pregnancy or if you already have a genetic disorder. Or that genetic counselors only give out bad news. Our clinic’s work is broader and more positive than that.
What’s unique about our clinic is that we see mostly people who have common chronic disorders that have a genetic basis, like cancer, heart disease, Parkinson’s disease and Alzheimer’s disease. The core of our work is taking a family history through four or five generations.
After we talk about the history with the patient, we can help provide information and advice. We can help people sort through whether they should have a genetic blood test (if one exists for their condition or suspected condition). If there’s a disease in the family — one for which we don’t yet have a genetic test — we can bank DNA to do future testing and later offer genetic testing or counseling to other family members.
Do you have any cautionary words about genetic testing?
The future of genetic medicine is exciting, but it needs to be approached cautiously. Just because a test exists doesn’t mean that everyone should take it. Tests can be expensive, and they’re not always cost-effective for the health-care system. More generally, even if tests don’t cost much, test results should be interpreted through genetic counselors or other health professionals.
I think there’s some misuse of genetic testing (not at our clinic, but elsewhere). Sometimes people undergo a panel of very expensive genetic tests, and they find out that the right test wasn’t included. And people aren’t told that if you have a genetic test, there’s actually a fairly good chance of finding a genetic variant of uncertain significance. (That’s a change in the genetic material that may or may not be clinically significant.) If a patient has a disease that runs in the family, that genetic variant may be hard for them to interpret. It can sometimes cause unnecessary anxiety.
What’s it like to be a patient at your clinic?
I’ll give you an example. Let’s say a person has a brother, sister or parent with colon cancer, and they start to wonder about their health: should I have a colonoscopy? Am I going to get cancer? Is there anything I can do to prevent getting cancer? Is there a blood test I should have? Their health-care provider will refer them to us.
A genetic counselor will take a family history and map out the disease in the family, particularly related to cancer. They’ll also map out who’s had colonoscopies and whether they’ve developed pre-cancerous colon polyps. Then we can talk about who in the family should be tested, how much the test costs and whether insurance will cover it, and make recommendations for cancer screening and prevention. We help people take an active role in their own health.
How does someone become a genetic counselor?
You need a master’s degree in genetic counseling, then you take a board exam and become licensed. Most counselors have a pretty strong background in science, but some people have a bachelor’s degree in education, social work or nursing before they enter the master’s program.
What are the codes or standards in your field?
We have a very strict code of ethics and standards; I chaired the committee that recently revised it. The code includes protecting confidentiality and family history and keeping up with the field, which advances rapidly.
In addition, the Genetic Information Non-discrimination Act was passed about a year ago. Although there was little evidence that people involved in genetic research projects or receiving genetic counseling or testing were being discriminated against, the fear of discrimination was strong. The law makes people feel more comfortable.