For most people, confronting the results of a genetic test can be stressful, if not overwhelming. In an effort to provide support and guidance in interpreting the test results, Memorial Sloan Kettering’s Clinical Genetics Service has a staff of genetic counselors who offer information and education about genetic risk factors for families who have chosen to be tested.
According to Memorial Sloan Kettering genetic counselor Megan M. Harlan, the demand for genetic testing has surged in the past five years as awareness of its availability has grown. “Overall, we have definitely seen an increase in both the number of people interested and the amount of information they come in with,” she said. To keep pace with the demand, the service added two additional counselors in 2008, increasing the total to eight.
Memorial Sloan Kettering’s Clinical Genetics Service offers testing for more than 50 kinds of genetic alterations linked to cancer. Genetic counselors help patients understand what the test results suggest about their risk for developing a specific type of cancer and the options available to them to manage that risk. The outcome of testing can have profound consequences, guiding treatment decisions and sometimes resulting in preventive surgery.
“Unlike most medical procedures, genetic testing can affect health-related and even reproductive decisions of entire families,” said genetic counselor Emily A. Glogowski. Many times, a counseling session will include not only the patient, who may have received a cancer diagnosis, but also members of his or her family, who might have the same mutation.
Every patient contemplating a genetic test at the Center receives counseling before testing is conducted and again after the results come in. A counselor meets one-on-one with the patient, constructs a pedigree (family tree), and discusses if a genetic test is appropriate. A physician on the Clinical Genetics Service then joins the discussion to answer medical questions.
The pretest counseling is important for psychological support as well as preventive information. “We always ask the patient ahead of time: ’How would you use this information?’” commented genetic counselor Yelena Kemel. “If they won’t use it, maybe they shouldn’t be tested.”