Health care providers often refer patients to a certified genetic counselor (CGC) following a diagnosis or in an effort to find causes for ongoing health problems, while others seek out genetic counseling on their own. Patients visiting a CGC may be anxious about their health, but the encounter doesn’t have to be nerve-wracking. Here’s what to expect.
First, you don’t have to go alone. Christin Coffeen, MS, CGC, a licensed certified genetic counselor, said patients are always welcome to bring someone for support. “You can bring somebody from a support group, a friend, a family member or even a religious mentor,” Coffeen said. “Sometimes there is a lot of information to discuss and process, and patients may want someone there with them for support.”
She likes to start by finding out what brought them to her. Patients meeting with a CGC before having a DNA test (pre-test genetic counseling) will be asked questions about their personal and family health history, potentially including a review of their medical records.
“In a cancer setting, for example, the counselor will look at how old is this affected person, do they also have family members with cancer, and if so, what type and at what age?” she said. The genetic counselor will look for clues that indicate whether a DNA test would be helpful, including certain types of cancers clustering together within a family or in an individual. A genetic counselor also will ask about the age of onset for conditions affecting patients and their family members, because the earlier that age, the more suspicious a genetic counselor will be that a person may be genetically predisposed to a particular condition.
As part of the discussion, a genetic counselor also will help patients decide if they want to undergo genetic testing, if indicated. “We do delve into the psychosocial side of things,” Coffeen said. “We talk about why you might or might not want to do testing, what are things you need to think about before the test and how to move forward when you’ve had a particular result.”
One of the most common questions she gets is how the test (or result) will impact a patient’s loved ones. “That’s the thing about a genetic test — unlike many medical tests, you’re not just testing you, you’re testing your entire family,” Coffeen said. “These tests have implications for your biological relatives, from your parents to your cousins and beyond.” But it’s okay to come alone, too, Coffeen said. Sometimes, patients want to discuss their test and consider their options in private, before opening a discussion with family and friends.
Most patients can expect to meet with their genetic counselor at least once, sometimes more than once if having both pre- and post-testing discussions. After a test, Coffeen said, a genetic counselor can help to put the results into context for the patient, including discussion of potential risks to family members and the risks, benefits and limitations of any potential next steps and offer guidance about treatment and surveillance options based on the results. “Someone with a cancer diagnosis, for example, might have questions with regard to chemotherapy, radiation and surgical options,” Coffeen said.
Following testing, patients and family members also sometimes may feel a false sense of guilt, from a parent who passed on a mutation to siblings who did not end up with a mutation while their brother or sister did, Coffeen said. A genetic counselor will help patients and their family members with these and other feelings that may arise as a result of genetic testing.
The most important thing to expect from a meeting with a genetic counselor is that you’ll find a trusted and knowledgable advisor and advocate to help you understand and navigate the complex issues around a DNA test. That complexity is why DNA testing shouldn’t be done in a vacuum, Coffeen said. “The actual test is just the middle part of the conversation.”
When you’re ready to have that conversation, DNA Ally is there to help put you in touch with a genetic counselor.