What to Expect When Meeting With a Genetic Counselor

Approved by the Lineagotica Editorial Board, 04/2018

Cancer genetic counseling involves having a certified genetic counselor help you and your family understand your inherited cancer risk. Inherited cancer risk may be passed from parent to child. A genetic counselor explains available genetic tests and what they mean. He or she can also offer information about cancer screening, prevention, and treatment options and provide support.

A genetic counselor’s training and certification

A genetic counselor is a health professional with specialized training in medical genetics and counseling. Most genetic counselors have a master's degree in genetic counseling. Some have degrees in related fields, such as nursing or social work. Genetic counselors are certified through the American Board of Genetic Counseling. They are often licensed by their state. Like other health professionals, they must participate in continuing education to maintain their certification.

The role of a genetic counselor

Genetic counselors are trained to advise you about:

  • Your risk of developing specific types of cancer based on your family history

  • Genetic tests that can give you more information about your risk of certain types of cancer

  • The testing process and the limitations and accuracy of genetic tests

  • Emotional, psychological, and social consequences of knowing the test results

  • Cancer screening and monitoring options

  • Cancer prevention

  • Diagnostic and treatment options

  • The privacy of your genetic information

  • Talking with family members about cancer risk

Preparing for an appointment with a genetic counselor

You can get more out of your genetic counseling appointment if you have more information about your family’s cancer history. Helpful information that may be requested by the genetic counselor includes:

  • Your medical records. This includes doctor notes and pathology reports. Pathology reports are your laboratory test results from any biopsies, surgeries, or screening examinations, such as colonoscopies.

  • A list of family members that includes each person’s current age or age at the time of death and cause of death. This list should include parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins on both sides of your family.

  • Information on specific types of cancer that have been diagnosed in the family. This includes the age at which family members were diagnosed with cancer and where in the body the cancer started. Pathology reports are often helpful.

Although having this information is very helpful, it is not necessary. You should not avoid genetic counseling just because you do not know a lot about your family history.

When going to the appointment, consider taking someone with you. This could be a family member or friend, depending on your preference. The genetic counselor will discuss a lot of information. Another person can help you listen and think of questions. If you choose to bring a family member, that person may also be able to provide information about your family history.

What to expect during the appointment

The following topics will be covered during your appointment with a genetic counselor:

  • Your personal medical history and cancer screening history.

  • Your family’s cancer history. The counselor will document your family tree and include at least 3 generations. The family tree will include information such as which family members have had cancer, what type of cancer they had, and their age at diagnosis.

  • The possibility of an inherited cancer risk. Depending on your family history, your counselor may be able to use computerized risk assessment tools to help estimate your risk.

  • The benefits and limitations of genetic testing for you and your family.

  • A strategy for genetic testing that best meets your needs.

  • Current laws regarding the privacy of genetic information.

What to expect after the appointment

Your genetic counselor will usually give you written information relevant to your family history and any genetic testing options discussed. In some situations, you or other family members may qualify for research or screening studies. Your genetic counselor can provide you with information about those studies and help you make the necessary arrangements.

If you choose genetic testing, your genetic counselor can help you coordinate the details, including finding out if insurance pays for the costs of the test. When the test results are available, your genetic counselor can review them with you and help you understand them. He or she will then discuss next steps, such as whether you may need cancer screening. Your genetic counselor will also usually give you a copy of the test report and a summary that explains the results.

In the long term, your genetic counselor will continue to be a resource for you and your family. It is important to call your genetic counselor if you have any questions or if changes occur in your family’s cancer history.

Finding a genetic counselor

To find a genetic counselor in your area, ask your health care team for references. Or you may search the National Society of Genetic Counselors and National Cancer Institute databases.

Related Resources

The Genetics of Cancer

How to Share Genetic Test Results With Family

Understanding Cancer Risk