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Review expert guidelines regarding who should consider genetic testing, how to find a genetics expert and how to move forward with testing.
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Hereditary Cancer and Genetic Testing

How To Get Testing > Testing Guidelines > No Cancer > Guidelines for Testing

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Guidelines for Testing
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Benefits of Testing
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Gene Mutations

Genetic testing for people who have never been diagnosed with cancer

Experts recommend that people with any of the following family history should speak to a genetics expert about genetic testing:

A relative who has tested positive for an inherited mutation in a gene that increases cancer risk.


OR

One or more first- or second-degree relatives with breast cancer and any of the following:

  • diagnosed at age 50 or younger
  • two separate breast cancers, with the first diagnosis at age 50 or younger
  • male breast cancer


OR

One or more first- or second-degree relatives with:

  • colorectal cancer before age 50
  • endometrial cancer before age 50
  • ovarian, , primary peritoneal cancer
  • rare or childhood cancers


OR

One or more first-degree relatives with:

  • or high-grade cancer
  • pancreatic cancer


OR

 Two or more relatives on the same side of the family diagnosed with any combination of the following at any age:
  • breast cancer
  • pancreatic cancer
  • cancer
  • melanoma
  • sarcoma
  • adrenal cancer
  • brain tumors
  • leukemia
  • endometrial cancer
  • thyroid cancer
  • kidney cancer
  • diffuse gastric cancer
  • colon cancer


OR

You are of Eastern European Jewish ancestry and have any relatives with breast, ovarian or pancreatic cancer at any age.


Other people who may benefit from genetic counseling and testing

  • People of Eastern European Jewish ancestry—even those without any family history of cancer—may wish to speak with a genetic counselor about testing.
  • You may benefit from genetic counseling if you have had more than 10 colon polyps.
  • You may also benefit from additional genetic counseling and expanded genetic testing if you had genetic testing in the past, you tested negative, and all of the following apply:
    • you have a family history of cancer that matches any of the situations listed above.
    • your genetic test only looked at one, or a few genes.
    • none of your relatives have tested positive for an inherited gene mutation.


See our section Testing Guidelines by Cancer Type for additional guideline information. 

This is not a complete list of hereditary cancers. A genetics expert can help you learn if the cancer in your family is hereditary. 

Last updated August 31, 2021

Find Experts
Find Experts

Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.

  • The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization." 
  • InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference. 
  • JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
  • Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone. 
  • The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors. 
  • FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you. 
  • FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
  • Ask your doctor for a referral to a genetics expert. 

updated: 03/16/2022

Get Support
Get Support

FORCE offers many peer support programs for people with inherited mutations. 

updated: 08/06/2022

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