Questions and Answers About Genetic Counseling

LEXINGTON, Ky. (June 25, 2013) - The following column appeared in the Lexington Herald-Leader on Sunday, June 23.

By Elizabeth Reilly

Genetic counseling for breast cancer has been in the news recently, in light of Angelina Jolie’s announcement that she tested positive for a gene mutation known to substantially increase the chance of breast cancer. Genetic counselors help to arrange genetic testing, interpret test results, provide information and support to patients and family members who have a strong personal or family history of cancer.

Who should consider seeing a cancer genetic counselor?

Only about 5-10 percent of all cancer is caused by inherited genetic mutations. Therefore, most people with cancer or a family history of cancer do not have a hereditary cancer syndrome.

However, consider seeing a genetic counselor if you have had cancer diagnosed at a young age (before age 50); have had ovarian cancer at any age; been diagnosed with cancer more than once (two different cancers); or have had a rare cancer, such as male breast cancer.

Additionally, seek counseling if a family member has had a genetic mutation causing a hereditary cancer syndrome; two or more family members on the same side have the same type of cancer (especially if diagnosed before age 50); a family member has a rare cancer; or you’re a member of an at-risk population, such as the Ashkenazi Jewish population.

What happens during a counseling appointment?

Your counselor will ask about your personal medical history and your family history of cancer, and discuss whether these histories are a cause for concern. You will discuss specific cancer risks and the appropriate cancer screening and prevention options. 

Your counselor will tell you your chances of having a genetic change causing a hereditary cancer syndrome and if testing is available for that syndrome. If genetic testing is performed, you and the counselor will decide how you want to be contacted with the results. When results are in, you will discuss them in detail and create a personalized cancer screening and prevention plan.

Is genetic counseling and testing covered by insurance?

The genetic counseling appointment is billed separately from any genetic testing performed. Many insurance companies cover all or part of the appointment. \Many, including Medicare and Medicaid, also cover all or part of genetic testing costs if you meet medical necessity criteria. A genetic counselor can help determine if you meet the criteria for your insurance company.

What about genetic discrimination?

The Genetic Information Nondiscrimination Act is a federal law that went into effect in 2009. It makes it illegal for health insurance companies and employers to discriminate based upon a person or their family members’ genetic test results. Group and individual health insurers cannot consider a genetic mutation a pre-existing condition and they cannot use genetic test results to set eligibility, premium or contribution amounts.

Employers may not use genetic information to make decisions about hiring, firing, job assignments and promotions. The act does not cover life, disability, or long-term care insurance. It also does not apply to employers with less than 15 employees and members of the U.S. military.

Elizabeth Reilly is a genetic counselor for the UK Markey Cancer Center.