In an episode of NSGC’s Genetic Counselors and You consumer podcast series, NSGC Cancer Expert Joy Larsen Haidle and family physician, Sarah Coles, MD, discuss how genetic testing and counseling is part of understanding genetic risk. Larsen Haidle is a genetic counselor at North Memorial Health Cancer Center in Robbinsdale, Minn. and Coles is a family physician from Phoenix, Ariz.
Larsen Haidle and Coles discuss the risks and benefits of direct-to-consumer testing and advise people to read the fine print before purchasing a direct-to-consumer (DTC) testing kit. This is key in understanding what the results might mean, discovering what resources are available and the level of privacy that is involved with the information submitted.
The pair also note that other tests, which can be ordered by a physician or genetic counselor, are available for people to take as an alternative to DTC testing. They emphasize that just because a test is easily available doesn’t mean that every person will find value in the results. “It’s all about defining what their values and goals are in healthcare… what is most important to them in their healthcare so that we…can help meet those goals,” Coles said.
Prior to recommending specific genetic tests, a genetic counselor often conducts an assessment of a family history. For individuals with a history of cancer, the family history helps to identify patterns of cancers that might be present in a family. “It’s important for us to have a conversation about what kinds of cancer appear in the family, which relatives have that kind of cancer, and how old they were at the time they were diagnosed,” said Larsen Haidle.
Finding similar experiences in their practices, both Larsen Haidle and Coles also highlight how healthcare providers can act as a resource for not just the patient undergoing testing, but also their entire family. As a genetic counselor, Larsen Haidle not only talks about genetic test results and what they mean for the patient, but also how they can impact other people in that family. Coles works with multiple generations of families as a physician, so she is able to set up appointments with multiple family members to talk about results.
The family history assessment can also help healthcare providers identify the best candidate for testing. Coles and Larsen Haidle agree that testing key people in a family can provide information to the rest of the family. “If we can pick the strategy to test the best person in that family, more people will benefit from that test result,” Larsen Haidle notes.
In any case, having a well-functioning healthcare team is important when considering genetic testing. Physicians and genetic counselors work side by side as part of an individual’s healthcare team. Coles shares that genetic counselors are experts who not only figure out complicated genetic issues, but also “help piece out family histories and some of these more nuanced or difficult social dynamics that come to play in thinking about genetics and risks of genetic testing.”
Lastly, Larsen Haidle and Coles discuss their takeaways from their conversation. Coles advises consumers considering DTC genetic testing to understand what is being tested, the risks and benefits of those tests and how that information can be used to make healthcare decisions. Larsen Haidle adds that if an individual is uncertain about a specific test result or there was mutation was identified, to reach out to a physician or genetic counselor.
Resources are available for patients through NSGC’s consumer website including the Find a Genetic Counselor tool, which helps providers looking to refer a patient to a genetic counselor and patients who would like to find a genetic counselor on their own because they would like understand their DTC test results mean or have a formal risk assessment. CDC’s Bring Your Brave campaign also has resources specific to breast cancer for women under the age of 45.
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