Genetic Testing for Cancer Risk
Genetic testing can help inform someone’s cancer risk, especially when certain types of cancer seem to run in families. Before deciding to get genetic testing, be sure you understand what these tests look for and what they can and can’t tell you about your cancer risk.
What is genetic testing?
Genetic testing is a type of medical test that looks for certain gene changes (mutations) in a person. Many types of genetic tests exist for many purposes and more are being developed. Here, we focus on how they are used to understand cancer and cancer risk.
For cancer risk
Genetic testing can help inform the likelihood that someone will get cancer at some point in their life.
While this information can be helpful for some people, it cannot say for certain if you will or won’t get cancer. Cancer risk depends on many factors and can also change over time due to lifestyle choices, exposure to cancer-causing agents, and aging.
Biomarker tests vs. genetic testing
If you have been diagnosed with cancer, your cancer care team might order biomarker tests to look for certain gene or protein changes in cancer cells to help plan treatment or give information on your outlook (prognosis).
These types of tests look for gene changes only in the cancer cells. These tests are not the same as the tests used to find out about inherited cancer risk.
Who might benefit from genetic testing
While most people do not need genetic testing, it might be suggested for several reasons.
Having a strong family history of certain types of cancer
Based on your family history and what kinds of genetic tests are available, genetic testing might be done to see if you have an inherited gene change. For some types of cancer, no known gene changes have been linked to an increased risk.
If you have an inherited gene change, you might be recommended to start getting screened for cancer at a younger age or more often. You also might want to take steps to try to lower your risk. Your family members might also consider getting genetic testing.
Consider talking to your primary care team about seeing a genetic counselor about genetic testing if you have:
- Several first-degree relatives (mother, father, sisters, brothers, children) with the same type of cancer
- Many relatives on 1 side of the family who have had the same type of cancer
- A cluster of cancers in your family that are known to be linked to a single gene change such as breast, ovarian, and pancreatic cancers, which are sometimes linked to BRCA gene changes
- A family member with more than 1 type of cancer
- Family members who had cancer at a younger age than normal for that type of cancer
- A family member who has cancer in both paired organs, such as both breasts or both kidneys
- A rare cancer such as breast cancer in a man or retinoblastoma, in you or a family member
- Close relatives with cancers that are linked to rare hereditary cancer syndromes
- A physical finding that’s linked to an inherited cancer such as having many colon polyps
- A known genetic change in 1 or more family members who have already had genetic testing
- Lab tests of your cancer cells that show features that might be linked to an inherited gene change
- A particular race or ethnicity such as Ashkenazi Jewish ancestry, which is linked to a higher risk of BRCA gene changes
Learn more about the types of cancer that might be linked to inherited genes.
After certain cancer diagnoses
Genetic testing might be done after a cancer diagnosis if there are reasons to think your cancer might have been caused by an inherited gene change, such as:
- A strong family history of the cancer
- If you were diagnosed with a cancer at a young age
- If the cancer is uncommon
It might show if you have a higher risk of developing some other cancers. It can also help other family members decide if they want to be tested
Is genetic testing covered by insurance?
Most insurance plans cover genetic counseling and testing if it is considered medically necessary. Whether a specific person will be covered depends on several factors. For example, the person’s personal or family cancer history might need to meet certain criteria for testing.
Federal healthcare laws require that genetic testing should be covered for some women who do not have cancer themselves but are found to be at higher risk for a BRCA1 or BRCA2 gene change. The amount of coverage will depend on their health plan.
It’s best to get an idea of how much testing is likely to cost before you have it done. Some genetic tests are more extensive and costly than others. Your genetic counselor might be able to help you understand the likelihood that your test will be covered and the policies for pre-authorization and billing.
Financial support
If your insurance won’t pay for your genetic testing, there are organizations that offer financial support for testing. Your healthcare team or genetic counselor can help you find these programs.
Privacy considerations
Even if genetic testing is covered, you might decide not to ask your insurance company to help pay for testing. Some people choose to pay for it themselves to keep the results as private as possible.
Could genetic test results lead to discrimination?
Much personal health information, such as results of genetic tests ordered by your healthcare provider or genetic counselor, are protected by federal laws and regulations.
Health Insurance Portability and Accountability Act (HIPAA)
People who get genetic testing in a medical setting are protected by HIPAA. This act defines who can receive your genetic testing information and how it can be used. However, HIPAA does not apply to data shared through direct-to-consumer or home-based testing.
GINA (Genetic Information Nondiscrimination Act of 2008)
GINA is a federal law that prohibits the use of genetic information in workplace employment decisions for non-governmental organizations with more than 15 employees. This law also bars health insurers from making coverage or cost decisions based on genetic information.
GINA defines genetic information as:
- A person’s genetic test results
- Genetic test results of family members
- Knowledge that one or more family members have a genetic disease or disorder
GINA bars employers from discriminating on the basis of genetic information in hiring, firing or layoffs, pay, or other personnel actions such as promotions, classifications, or assignments. The law applies no matter how they got the information.
Employers are not allowed to require genetic testing and can’t collect genetic information in making employment decisions. However, they are allowed to request genetic testing to monitor exposure to potentially toxic chemicals and substances in the workplace. This does not include testing for gene changes that might indicate a higher risk of cancer or a hereditary cancer syndrome.
Employers must keep genetic information confidential. They can’t release or share genetic information except when they are:
- Fulfilling a request from the employee
- Fulfilling a request from a health researcher
- Complying with medical leave law
- Disclosing or reporting to a public health agency
GINA bars health insurers, including group health plans, individual plans, and Medicare supplemental plans, from turning down people or charging higher premiums for health insurance based on genetic information or for using genetic services. This includes genetic counseling and testing.
The law also bars these insurers from asking for or requiring genetic tests. GINA applies to almost all health insurance plans including federally regulated ERISA plans, state-regulated plans, and private individual plans. Although, certain federal health plans are excluded.
Certain types of insurance: GINA’s protections do not apply to life insurance, disability insurance, or long-term care insurance. If you’re thinking about getting these types of insurance, talk with your doctor or genetic counselor about when to have testing.
In states with stronger laws: A few states have stronger laws than GINA. The state laws take precedence over GINA as long as they are broader in scope. GINA establishes a national baseline protection while allowing states to impose stronger protection.
Very small employers: GINA does not apply to employers with fewer than 15 employees.
Certain federal health plans: GINA does not apply to military health plans, the Veterans Administration, the Indian Health Service, or Federal Employees Health Benefits Plans.
Home-based genetic tests
Home-based genetic tests, also known as direct-to-consumer genetic tests, look for gene changes and can be bought without a doctor’s order. For this type of testing, you purchase a test kit and send a sample of your DNA, often from saliva, to a lab for testing. This is not the same as collecting your sample at home after a virtual or telehealth visit with a genetic counselor.
Home-based genetic tests should not be used instead of cancer screening or genetic counseling recommended by a medical professional based on your individual risk for cancer.
Always consult with your doctor if you are considering or have questions about genetic testing. Trained genetic counselors can help you know what to expect from genetic testing and understand your test results.
Potential limitations
Before using a home-based genetic test you need to know:
- What it’s testing for
- What it can and can’t tell you
- How reliable the test is
- What will happen with your DNA after testing is done
Even reputable home-based genetic tests do not provide complete information on a person’s overall risk of developing any type of cancer. Sometimes these tests can sound much more helpful and certain than they have been proven to be.
For example, a test might look for changes in a certain gene, but it might not test for all the possible changes that could still increase your cancer risk. You might or might not be able to review the test results with your doctor or a genetic counselor to get the full implications of the test.
Are home-based genetic test results private?
Results from home-based genetic tests are protected by GINA, but not HIPAA. This means the testing company might not have to follow the same medical privacy rules that apply to doctors and hospitals.
They could share or sell your genetic data or use it in other ways according to the company’s privacy policy. If you choose to use tests from one of these companies, be sure you understand what will happen with your DNA after testing is done. Certain states have passed laws to help protect privacy.
Will my genetic test results be used for research?
Medical researchers must get a person's informed consent before any studies of their tissue samples and DNA can be done. Some labs use a system where a person can decide whether to allow their leftover DNA to be used in research once the testing has been completed.
- Written by
- References
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as editors and translators with extensive experience in medical writing.
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Last Revised: May 12, 2026
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