What Is the Role of Genetic Counselors in Cancer Care?

Genetic counselors are one such specialist, along with other professionals such as medical geneticists, those working in research facilities, and genetics nurses. Components of the various roles often overlap, but genetic counselors have completed specialized education to understand medical genetics, provide personalized risk assessment, and help patients make difficult decisions regarding genetic testing and managing risk or disease.

Many genetic counselors assist high-risk patients who have a disease that may have a hereditary component, which range from genetic diseases identified during pregnancy or in childhood as well as common diseases like cancer or heart disease that may have a hereditary component that did not present until adulthood. Others work in testing laboratories to help classify variants, medical centers to assist physicians with ordering and understanding tests, research, public health, or education. Oncology genetic counselors work with patients with a current diagnosis or family history of cancer to assess the likelihood of a hereditary risk factor.

During a standard session, the genetic counselor will use information about the patient’s pathology, age at diagnosis, and family history of cancer to determine whether they meet guidelines for genetic testing. If testing is appropriate, the genetic counselor will review its risks and benefits and ensure the patient understands how the genetic information may change the course of treatment. Counselors facilitate the genetic testing process, which has become more complex given health insurance requirements and restrictions.

Testing can be a valuable resource for patients with cancer, but we often have patients think through how they or their families will respond to the findings. They can be lifesaving if a family is willing to use them, but some families aren’t ready to know the results and that’s okay, too. It’s all about informed decision making.

One obstacle we see is misinformation about genetic test results. As genetic testing gains popularity in health care, patients with abnormal genetic test results must consult with a healthcare professional who fully understands the information. Some oncology nurses are comfortable facilitating genetic testing but may have patients whose family histories are more complex.

With the development of direct-to-consumer genetic testing, patients can get tests without involving a healthcare provider, but that increases their risk of not fully understanding the results. When patients report using those services, oncology nurses and other members of the care team should collaborate with a local genetic counselor, or if none are available, a telehealth genetic counseling service (see page 18). Together you can discuss resources to best identify which patients meet criteria for more clinical genetic counseling or testing. The National Society of Genetic Counselors offers access to more than 3,000 genetic counselors (https://www.nsgc.org/page/find-a-genetic-counselor) across the United States and Canada, either in-person or via telehealth.

A cancer care team should include a healthcare professional who has a background in oncology genetics because germline genetic test results have a role in determining treatment, preventing other diagnoses, and reducing cancer risk in family members. Genetic counselors are one such genetics professional trained to fill that role.