National Society of Genetic Counselors

    How often should you keep in touch with your genetic counselor?

    When I explain my job as a genetic counselor to family members or people I talk with while traveling, they are always surprised to learn that I meet with patients only one or two times. Some patients may have annual follow-up visits with their genetic counselor and geneticist, but for the majority of patients, their relationship with their genetic counselor consists of a couple appointments and a few phone calls.

    Still, I encourage patients to follow up every year or so either by phone or email. We can touch base about any advances in the field of genetics that may impact them or their family, as well as just discuss how their screening or treatment has been going since our last meeting.

    If you’ve met with a genetic counselor, here are three reasons to stay in touch:

    1. Your personal or family history has changed.
      • If you learn new information about your family members’ medical history, or if other members of the family have been diagnosed with a new medical condition, such as cancer, tell your genetic counselor.  Genetic counselors analyze not only a patient’s personal medical history, but their family history as well. Having an additional family member diagnosed with cancer, for example, may mean a patient is now a good candidate for genetic testing or increased cancer screening.

    2. Find out if there are any new or updated genetic testing options available to you.
      • Even if you had genetic testing and no mutations were identified, you may be a candidate for more testing if new genes related to the medical conditions in your family become available for clinical testing.

    3. Stay up to date on changes in national management guidelines.
      • This is especially important for patients who have a positive genetic test.  Check in with your genetic counselor every year to learn if there is new information about how mutation carriers should be followed.

    Contacting your genetic counselor every year does not mean that there will be additional testing or screening recommendations for you or your family. Continuing to keep in touch with your genetic counselor will help you and your healthcare providers stay up-to-date with genetic testing technology and testing guidelines.

    Rebekah Moore, MS, CGC, LGC, is an NSGC Digital Ambassador and currently works in the Genomic Medicine Institute at Cleveland Clinic. She is passionate about empowering individuals at risk for hereditary cancer syndromes.

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