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Hereditary Cancer and Genetic Testing

Different tests for inherited mutations

Genetic testing is not one-size-fits-all. Different labs offer different types of tests. Choosing the right test is complex. You should consult with a genetics expert before testing to assure that the right test is ordered from a reputable lab. 


Which genes are included?

Some genetic tests look for just one or a few specific gene mutations. Other tests, known as a "multigene panel test," look for mutations in many genes at the same time. It's important to understand which genes are included in the test before your genetic test has been ordered and after you receive your test results, . For more information, visit our page on the genes associated with different types of cancer.


Genetic tests may differ in other ways

  • Cost: The cost of a genetic test may depend on the lab performing the test, the type of test ordered, health insurance coverage, and patient eligibility. Insurance will usually cover the cost of genetic testing, but out-of-pocket costs may vary. You can learn more about paying for genetic testing here
  • Laboratory: Many different labs offer genetic testing. It is important to use a reputable lab that is certified by the College of American Pathologists (CAP) or Clinical Laboratory Improvement Amendments (CLIA). You can view a list of reputable labs below.
  • Source of  sample: Genetic testing may be performed on blood or a cheek swab (saliva). Both methods are reliable.
  • Testing method: Labs may use different methods to test for mutations. The testing method may affect the cost, accuracy and time it takes to get results. Genetic test results usually take two to three weeks. Quicker results may be available for people who need the information to make urgent treatment decisions.   


Using ancestry testing for cancer risk

Many companies offer genetic testing to help people find relatives or learn more about their ethnicity. These tests are sold for recreational purposes only. They are not meant to guide medical decisions.

Some ancestry testing companies may offer limited testing for a small number of mutations in , and some genes that are linked to Lynch sndrome. Ancestry tests do not look for many of the other gene mutations that may be linked to cancer. For example, there are almost 3,000 known mutations in and over 3,300 known mutations in . Ancestry tests only look for a few of these. Other genes, such as and are not included in the current ancestry tests.

The warns people not to use ancestry test results to make medical decisions, and advises individuals to have testing with a clinically certified lab to confirm the results. The agency also emphasizes “it is important for patients to consult their health care professional who can help them understand…their individual cancer risk.”
 

Filing a complaint against a lab

Agencies oversee the conduct of genetic testing labs in the United States. 

  • Clinical Laboratory Improvement Amendments (CLIA)
    • All clinical laboratory testing performed on humans (except in clinical trials and basic research) is governed by the CLIA.
    • If you have concerns or need to file a complaint about a lab that conducted clinical testing, you or your health care provider can file a complaint with your state CLIA contact. 
    • All other questions about the CLIA program should be submitted to LabExcellence@cms.hhs.gov.
  • The Food and Drug Administration ()
    • The tracks adverse events and concerns about laboratory tests through MedWatch: the  Safety Information and Reporting Program. Patients or providers can report adverse events to the .
Last updated January 31, 2022

Key Facts about Hereditary Cancer
Key Facts about Hereditary Cancer

  • FORCE recommends that people see a genetics expert before and after genetic testing in order to assure the proper test is ordered and the results are interpreted correctly. 
  • Genetic testing is usually covered by insurance for people who meet testing guidelines. Low-cost genetic tests, testing within research studies, and financial assistance are available for those who do not have adequate insurance coverage for testing. 
  • Ancestry testing may include testing for some mutations linked to cancer. These tests are limited and should not be used to make health care decisions. 

Paying For Care
Paying For Care

Insurance coverage for genetic counseling and testing

Most health plans cover genetic counseling and testing for inherited gene mutations linked to cancer in people who meet the national guidelines. The cost of testing and your out-of-pocket charges may vary based on several factors.

People who are denied coverage for genetic testing can file an appeal (FORCE has sample appeal letters). Your healthcare provider can work with your insurance company and help you file an appeal if needed. Low cost testing may be available for $250 or less. Learn more about coverage for genetic counseling and testing here

If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.

testing under the Affordable Care Act

Under the Affordable Care Act (ACA), insurance companies must pay for both genetic counseling and  testing with no out-of-pocket costs for women who meet certain criteria. The ACA regulations are limited to testing for and only and do not cover genetic counseling or testing in all situations. You can learn more about testing under the ACA here

Medicare and Medicaid coverage of genetic testing

Genetic counseling and testing is typically covered by Medicare for people already diagnosed with cancer who are in treatment or for whom test results may affect their care. Most state Medicaid programs cover genetic testing for and mutations for people who meet requirements, which vary by state. You can read more about Medicare and Medicaid coverage of genetic testing here.

Financial assistance or low cost genetic testing

JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available. Many laboratories offer low-cost genetic testing or financial assistance programs. Programs vary, so if you are not eligible for assistance through one lab, consider contacting other labs to see if you qualify .   

updated: 11/15/2022