Frequently asked questions about genetic counseling and testing

What is genetic counseling?

Genetic counseling is the process of helping identify patients and families who may have a higher chance to get certain types of cancer because of a genetic factor. It helps people understand and process the medical, emotional, and familial aspects of genetic conditions. 

What does a cancer genetic counselor do?

Genetic counselors are specially trained health care professionals with a background in medical genetics and counseling. They are certified by the American Board of Genetic Counseling (ABGC).

What happens at a genetic counseling appointment?

• Reviews your personal medical history and family history with you.
• Assesses your chance to get certain types of cancer as well as the chance of a hereditary (inherited) cancer condition in your family.
• Discusses potential options for genetic testing with you.
• Explains how genetic conditions are passed down in families.
• Provides information about genetic conditions and assist with referrals to medical specialists, support networks, and other resources.
• Assists you and your physicians in determining if you should be doing increased cancer screening.

What happens at a cancer genetic counseling appointment?

The initial genetic counseling appointment can last from 30 to 90 minutes, and medical/family history will be reviewed. At this time patients may wish to continue with testing, decline testing, or return home and take some time to make a decision. A blood sample could be collected on the same day for genetic testing. You’ll also discuss your concerns about cancer and options for genetic testing and/or cancer screening.

Will I be required to have genetic testing?

No. During the genetic counseling appointment, you and the genetic counselor will discuss if genetic testing is appropriate for you, as well as what information it may or may not provide you. At the end of the appointment you will get to decide if you want to have genetic testing or not, or if you want to take some more time to think about it or discuss it with your family.

Why is genetic counseling helpful for genetic testing?

There are many different genetic tests available. Genetic counselors have special training to help you understand the benefits and limitations of a genetic test, as well as which genetic testing is best for you and your family.

Genetic testing results are not always straight forward. There is a possibility of getting an uncertain result or a result that doesn’t explain your personal or family history of cancer. The genetic counselor will help you understand these limitations of genetic testing. Your genetic counselor will also help interpret your test results for you and help you determine what type of cancer screening you and family members could be doing.

Some insurance companies require genetic counseling before genetic testing.

What can I learn from genetic counseling after having cancer?

Genetic counseling may be helpful for individuals with or without a personal history of cancer. Individuals who have already had cancer may learn about steps they can take to detect or reduce the chance of another cancer. Genetic counseling can also provide information about cancer risks for family members and what they can do to detect or prevent cancer in them.

What about insurance discrimination and confidentiality?

There is a federal law called the Genetic Information Non-Discrimination Act (GINA) to help protect you against genetic discrimination. GINA states that employers and health insurance cannot use genetic information.

GINA does not cover individuals with Tricare military health insurance, veterans who receive care through the Veteran’s Administration, the Indian Health Service, or federal employees who receive care through the Federal Employees Health Benefits Plans. However, these policies have protections against genetic discrimination in place similar to GINA.

GINA also does not protect you from discrimination when it comes to life insurance, long-term care insurance, or disability insurance.