Understanding the Role of the Genetic Counselor


Genetic Counselor Joy Larsen HaidleSharing family stories can do more than bring relatives closer together.  When the stories are about health, they can help family members make the right medical decisions. 

Genetic counselors play a key role in helping patients and their families get the care that’s right for them.  Genetic counselors work with doctors and other members of the health care team to help patients understand what their family history means to them, decide  what genetic tests to have, and know how to use the test results to make the best treatment choices.  This is especially helpful today as medicine becomes more personalized, and treatment plans increasingly are tailored to a patient’s individual needs.

Referral to a genetic counselor often raises many questions for patients and their family members.  As a genetic counselor specializing in cancer, I’d like to answer some of the common questions we receive. 

What is a genetic counselor?

Genetic counselors are an important part of the healthcare team. They work with patients and their families to help them understand genetic testing, guide them through the process and help them make informed choices based on their genetic testing results. Some also work in laboratories and help physicians select the most appropriate genetic test, determine the likelihood that the test will be useful, discuss the test’s limitations and help ensure the results are understood. Genetic counselors collaborate with a variety of specialties including pediatrics, neurology, cardiology, prenatal and cancer. 

Genetic counselors work with doctors and other members of the health care team to help patients understand what their family history means to them, decide  what genetic tests to have, and know how to use the test results to make the best treatment choices.

Should I see a genetic counselor?

Meeting with a genetic counselor would be beneficial if one or more of the following is true about you or your family:

  • Early age onset of disease (ex. less than 50 years of age for breast and colon cancer)
  • Having a personal history of more than one cancer diagnosis
  • Three or more relatives on the same side of the family with the same type of cancer
  • Triple negative breast cancer
  • Ovarian cancer
  • Male breast cancer
  • Aggressive form of prostate cancer (Gleason grade 7 or higher)
  • A genetic mutation confirmed in a family member

How can I prepare for a genetic counseling visit?

Should I See A Genetic CounselorDuring the appointment, the genetic counselor will draw your family tree. Before your appointment, talk with your relatives about health problems that run in the family. Ask about grandparents, aunt/uncles, and cousins on both sides of the family.

For cancer genetics, it is important to learn about the kind of cancer, the age of the relative at diagnosis, current ages or ages at death for each relative. It’s also useful to ask about colon polyps, the age at diagnosis, number of polyps and the type (pre-cancer vs. benign). Information about past surgeries, such as removal of the uterus or ovaries, is also useful for a risk assessment.

All of this information helps the genetic counselor estimate the lifetime chance of developing cancer, discuss testing options and explain how the test results might be used in your medical care and that of your relatives. This then helps the genetic counselor work with your physician to personalize your medical care.

Will my insurance cover genetic counseling?

The consultation is often covered by insurance. It is important to check with your insurance company to determine the details.

Will my insurance cover genetic testing?

The majority of insurance companies cover genetic tests if they are medically indicated and will provide useful information for your medical management. Each policy is different so it is important to check with your insurance company. Your genetic counselor can help with this process, and many of the testing labs facilitate the insurance prior authorization process.

If you have a concern about your personal medical history or your family history, meeting with a genetic counselor can be valuable.  Find a genetic counselor in your area by using NSGC’s “Find a Genetic Counselor” tool.

Joy Larsen Haidle, MS, LGC, is president-elect of the National Society of Genetic Counselors and a genetic counselor at the Humphrey Cancer Center in Minneapolis. 

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