Do you have questions about genetic testing and genetic counseling? Here are answers to some of the most frequently asked questions.

What is genetic counseling?

Genetic counseling is the process of assessing and understanding a person’s risk of hereditary cancer. An initial genetic counseling session focuses on your questions and concerns about your or your family’s risk of cancer, based on your medical history and your family history of cancer. You will learn how genetic testing works so you can decide which tests, if any, may be useful for you.

What is genetic testing?

Deciding whether to have genetic testing is a personal choice that can be made at the time of your genetic counseling session or at a future date. Our goal is to provide clear and relevant information about genetic risk factors to support you in making a decision about testing. If you do decide to proceed with genetic testing, you and your genetic counselor will make a plan about how you will receive your test results.

Having a genetic counseling consultation at MSK does not mean you have to undergo genetic testing — genetic testing is not the right choice for everyone. Your personal preferences, your family’s experience with cancer, and your insurance coverage may influence your decision about whether to have genetic testing.

For many people, we are able to make an assessment about your cancer risk through genetic counseling alone, without genetic testing. However, some testing may help you and your doctor make important decisions about your medical care.

Who is a genetic counselor?

Genetic counselors provide guidance and support through the processes of risk assessment, genetic testing, and making informed choices for future healthcare. Genetic counselors have the knowledge and skills needed to assist individuals and families with making decisions about their genetic health. The genetic counselors at MSK all specialize in cancer genetics.

How is genetic testing done at MSK?

We can test genes for mutations that cause hereditary cancer syndromes using blood, saliva, or skin samples. These samples can typically be obtained on the same day as a Clinical Genetics Service (CGS) consultation in one of the MSK labs. Occasionally, testing may also involve cancer or polyp tissue taken during a previous biopsy or surgery.

Genetic testing often is first performed in a member of the family who currently has or has had cancer. If a genetic mutation is found in that person, family members can consider being tested for the same mutation.

Some cancers may be caused by mutations in one of several genes. We can test for related cancer genes one at a time, or we can test for them all at the same time. Testing multiple genes at once is called multigene panel testing. A genetic counselor can discuss which genes are included on a given panel test. The panels may occasionally be updated based on new research findings.

The results from testing are usually available within a few weeks after the samples are collected and submitted to the laboratory. The specific type of testing, specimen used, laboratory used, and insurance carrier may all contribute to the length of time until the results are available.

I already have had a cancer diagnosis. What can genetic counseling and genetic testing do for me now?

Genetic counseling can help you better understand how your cancer diagnosis may play a role in the pattern of cancer in your family. When you meet with an MSK genetic counselor, we will talk to you to understand your family history completely. We will ask questions about the health histories of your children, siblings, parents, and even members of your extended family. This information is important in determining if you have a hereditary cancer syndrome that other family members may share.

If you already have a cancer diagnosis, genetic testing can be helpful in four main ways:

• Genetic test results may provide an explanation as to why you developed that cancer.
• Genetic test results may be used to help guide your care plan. Some cancer treatments work particularly well in people with certain genetic mutations. Your test results could be useful for your doctor to help take the best care of you.
• Although you may have had a cancer diagnosis in the past and completed treatment, if you have a genetic mutation you may be at an increased risk of developing another cancer in the future. You may be eligible for specialized cancer screening if you are at a higher risk for another cancer.
• Some people may choose to use their genetic test results to help with reproductive decision-making. For example, a technology using in vitro fertilization allows for selecting embryos that do not have specific genetic mutations. It can reduce the risk of certain genetic mutations being passed on to the next generation.

Does insurance cover the cost of genetic counseling and testing?

Yes, many insurance companies cover genetic testing at MSK, though each carrier has different criteria for coverage. If you have questions regarding your specific plan, check with your insurance carrier directly or call the Memorial Sloan Kettering Insurance Line at 646-497-9176.

Some insurance carriers may require that you get preauthorization for genetics counseling and testing services. The CGS is unable to request this for you. If your insurance carrier requires preauthorization, your referring doctor will need to call the insurance company before your first appointment with CGS. We can give you a letter of medical necessity to submit to your insurance company after you have completed counseling.

Some insurance companies may require that you provide CPT codes for precertification. The specific CPT code for a genetic counseling visit depends on the amount of time you spend with your counselor. The codes are:

People with a personal history of cancer

• LV1 99201
• LV2 99202
• LV3 99203
• LV4 99204
• LV5 99205

People with no personal history of cancer

• 99401
• 99402

If you need to have blood work done on the day of your first appointment, you will receive information about related CPT codes during your visit.

What if I have concerns about privacy and the confidentiality of my genetic counseling and testing records and the risk of genetic discrimination?

Some people considering genetic testing are concerned about discrimination due to their results. Genetic discrimination occurs when people are treated differently because they have a genetic variant that increases their risk of an inherited condition. When you register at MSK for the first time, you will receive a notice of our privacy practices. This includes who will have access to your medical records and for what purposes your records may need to be accessed.

Genetic test results and medical records are kept confidential at MSK. However, they may be disclosed to other healthcare providers at your request. They may also be disclosed to insurance companies and other individuals or entities authorized to access your medical records.

Your genetic counselor can clarify who will have access to your test results. We cannot fully guarantee that no one will ever try to use your genetic test results against you.

A federal law called the Genetic Information Nondiscrimination Act (GINA) protects people who have had genetic testing from health insurance and employment discrimination. GINA does not protect against this discrimination with other forms of insurance, such as life, disability, or long-term care insurance. People with or without a personal history of cancer may wish to speak with an expert about the potential for genetic discrimination before being tested.

What does it mean if I am asked to participate in genetic research?

The degree to which we can learn more about hereditary cancer and advance care is based on our ability to perform research studies.

Participating in research at MSK is completely voluntary. During your consultation, your genetic counselor will determine if you are eligible for any of the CGS’s ongoing research studies. Your counselor will explain the goals of the study and the possible benefits and risks of participation. You will be given an opportunity to ask any questions, and you can take as much time as you need to make a decision about participating. If you agree to participate in a research study but later change your mind, you can withdraw. You will not need to explain your decision.

Information obtained by research studies will be kept confidential. Only the research study teams have access to this information.

Some research studies may involve surveys about your history of cancer, medical care, and environmental exposures. Others may collect medical records or samples such as blood, saliva, urine, and stool. Finally, some studies may ask family members to participate in the research. They may also be asked to provide samples.

Learn more about current Clinical Genetics Service research.

I had genetic counseling in the past. When should I recontact my genetic counselor?

There are many reasons why you may want to reach out again to the Clinical Genetics Service at MSK. Genetic research never stops. Over time, new genes are identified. There could be a change in your eligibility for certain genetic tests. Sometimes your personal or family history of cancer changes, or you got new information about the growth of colon polyps. All this may affect your eligibility for genetic testing.

We recommend you contact the Clinical Genetics Service if you find out:

 

• You or a blood relative have a new cancer diagnosis.
• A blood relative had cancer that you did not yet tell us about.
• A blood relative was diagnosed with cancer at a younger age than you told us.
• A blood relative was diagnosed with a different type of cancer than you told us. For example, you learned that your aunt had ovarian cancer, not cervical cancer.
• A blood relative had a positive genetic test result (a mutation was found) in a cancer-related gene.
• You had many new polyps after another colonoscopy. Genetic testing may be right for you if you have 10 to 20 or more precancerous (adenomatous) colon polyps.

If you never had genetic testing and 1 of these applies to you, please contact us. You may now be eligible for genetic testing.

If you had genetic testing and 1 of these applies to you, please contact us. You also can contact us every few years. You may be eligible for updated genetic testing. 

Lastly, you can always reach out to us to talk about genetic test results that you got from a healthcare provider outside of MSK.