What to Expect When Meeting With a Genetic Counselor

Aprobado por la Junta Editorial de Cancer.Net, 04/2021

A certified genetic counselor can help you understand your risk for hereditary cancer. A hereditary cancer is any cancer caused by an inherited change to a gene. "Inherited" means that this genetic change, also called a germline mutation, can be passed from parent to child within a family.

What does a genetic counselor do?

A genetic counselor can evaluate your individual risk of getting certain types of cancer based on your family's medical history. They also explain which genetic tests can give you more information about your risk level.

It can be complex to decide whether you should have genetic testing to find out more about your hereditary cancer risk. Your counselor will explain the testing process, what the tests can and cannot do, and how well they work. Together, you will also discuss how knowing the test results may affect your emotions, mental health, and family. This information can help you decide if having genetic testing is right for you.

Genetic counselors can also advise you on:

  • Cancer screening and early detection options

  • Cancer prevention and risk reduction

  • Diagnostic and treatment options

  • The privacy of your genetic information

  • How to talk with family members about inherited cancer risk

How is a genetic counselor trained and certified?

A genetic counselor is a specially trained health care professional. They specialize in medical genetics and counseling. In the United States, 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. Like other health care professionals, they must take part in continuing education to stay certified. Many genetic counselors also have a state license.

Getting ready for an appointment with a genetic counselor

Knowing your family's medical history helps you get the most out of your genetic counseling appointment. Your counselor may ask for:

Medical records. This includes doctors' notes and pathology reports. Pathology reports are your laboratory test results from any biopsies, surgeries, or cancer screening tests.

A list of family members. Provide each person's current age or their age at the time of death and cause of death. This list should include your parents, full siblings, and children. It should also include your grandparents, aunts, uncles, cousins, nieces, and nephews on both sides of your family.

Information on types of cancer that have been diagnosed in your family. If you can, it's best to find out each family member's age at the time of their diagnosis and where in the body the cancer started. Pathology reports are also useful.

This information is very helpful, but you do not need to have it. A genetic counselor can guide you even if you do not know much about your family history.

You may want to take a family member or friend to your appointment. The genetic counselor will discuss a lot of information. Another person can help you take notes and think of questions. If you choose to bring a family member, they may be able to answer questions about your family history.

What happens during an appointment with a genetic counselor?

Your genetic counselor will ask about your personal medical history and the results of any cancer screening tests. Then they will look at your family's cancer history.

The counselor will map out your family tree and include at least 3 generations. The family tree will include:

  • Which family members have been diagnosed with cancer

  • What type of cancer was diagnosed

  • Their age at the time of diagnosis

Depending on your family history, your counselor will discuss your chance of an inherited cancer risk. They may use computerized risk assessment tools to help figure out your risk.

Your genetic counselor will also discuss these genetic testing topics:

  • The pros and cons of genetic testing for you and/or your family members

  • A genetic testing plan that best meets your needs

  • Current laws about the privacy of genetic information

What happens after an appointment with a genetic counselor?

Your genetic counselor will give you written information after your appointment so you can review it later. This information will include what they learned from your family history and information on specific genetic testing options.

It is possible that you or family members qualify for research or screening studies. Researchers are always trying to learn more about inherited cancer risk and hereditary cancer syndromes. Your genetic counselor can provide information about these studies and help you sign up if you are interested.

If you choose to have genetic testing, your genetic counselor can:

Help you handle pre-testing details. For instance, your counselor can find out if insurance covers all or part of the financial costs of the test.

Review test results with you. After your test results are complete, your counselor can help you understand what those results mean. They can give you a copy of the test report and a summary that explains the results.

Discuss what to do after testing. For instance, your counselor may suggest certain cancer screening tests or additional genetic tests.

In the long term, your genetic counselor will continue to be a resource for you and your family. This means you can call your counselor if you have any questions about your inherited cancer risk. It is especially important to tell them if your family's cancer history changes.

Find a genetic counselor

Ask your health care team how to find a genetic counselor in your area. Or you can search the American Board of Genetic Counseling database or the National Society of Genetic Counselors database.

Related Resources

Genetic Testing for Cancer in Families: An Expert Q&A

Collecting Your Family's Health History

The Genetics of Cancer

How to Share Genetic Test Results With Family

Understanding Cancer Risk

More Information

U.S. Centers for Disease Control and Prevention: Family Health History

National Cancer Institute: The Genetics of Cancer