Frequently Asked Questions

How will this information benefit me?

People with a family history of cancer often worry about themselves or their children’s risk for developing cancer. Our goal is to provide individual risk assessment that can be incorporated into your ongoing medical care.

Some patients are reassured to learn that their own cancer risk is lower than expected. For individuals who are found to be at high risk, their physician may suggest careful observation and screening. Early detection is extremely important.

Will my insurance pay for genetic counseling?

Most insurance companies cover part, if not all, of the office visit charges. We strongly recommend that you check with your insurance policy to see if you require a referral from your primary care physician. The billing CPT code is 96040, for Medical Genetics and Genetic Counseling Services.

Will my insurance pay for genetic testing?

It is important to note that genetic testing is a separate charge from genetic counseling. During the appointment, we will review the medical necessity and current criteria for genetic testing, as well as the cost. We will discuss the benefits and limitations of genetic testing, which test would be most appropriate, and which family member (ideally) should be tested first. Most insurance plans cover all or a majority of the cost when there is a reasonable risk of a hereditary cancer syndrome. In recent years, the cost of genetic testing has dropped dramatically, and most patients can be tested for $250 or less.

What if my insurance company learns I have had genetic counseling or testing?

Some patients express concerns about the potential for discrimination by health and life insurance companies. There is federal legislation that provides protection against genetic discrimination by health insurers and employers, but not life insurance. This legislation is called the Genetic Information Nondiscrimination Act (GINA).

What information should I bring to my first counseling session?

We will review your family history (including siblings, parents, grandparents and cousins), asking about any cancer diagnoses. If a relative has had cancer, we will ask about the type of cancer, their age at diagnosis and how it was treated. If possible, medical records or death certificates are very helpful. If a relative has had genetic testing, it is extremely important to bring a copy of the laboratory result. However, we understand that there are many families who may not have specific details about their family medical history.

Can I just have genetic testing without counseling?

No. The genetic counseling and risk assessment is an important part of the testing process. The entire process is necessary for correct interpretation of test results and subsequent management options. Some insurance companies will not cover genetic testing unless counseling is performed first.

How does testing work?

The genetic test is performed on a blood or saliva sample. The laboratory test looks at your genes, which are made up of DNA, and focuses on the genes associated with stopping cancer. We are not looking to see if you “have” the genes, the question is whether your genes are capable of doing their job, which in this case is to defend your body against cancer. This test can come back one of three ways:

  • Positive: We have found a mutation (change) in one or more of your genes that we know is associated with an increased risk for cancer. In this case, we would discuss what this means for you and what screening and prevention tools are available and recommended.
  • Negative: After analyzing your genes, we did not find any changes that impact your risk for cancer. We then review the genetic test results in the context of the family history, to determine any specific cancer risks and related management guidelines.
  • Variant of Uncertain Significance (VUS): This label is used when a change is found in the DNA, but the lab is unsure whether the alteration (variant) is enough to increase the chance for cancer. Based on the data we have seen, the large majority of these changes are eventually reclassified as negative. The VUS designation is used to show that the lab is unsure but will continue to monitor the change and reclassify as soon as sufficient data are available. These results are treated as negative until proven otherwise. Our patients are also enrolled in our My Gene Counsel program, which helps keep you informed of updates.