Review expert guidelines regarding who should consider genetic testing, how to find a genetics expert and how to move forward with testing.
Guidelines for genetic testing in people diagnosed with , ovarian, or primary peritoneal cancer
Experts recommend all women diagnosed with , ovarian, or primary peritoneal cancer at any age have genetic counseling and testing. About 15-20% of women diagnosed with , ovarian or primary peritoneal cancer will test positive for an inherited mutation that caused their cancer.
Other people who may benefit from genetic counseling and testing
- You may benefit from additional genetic counseling and expanded genetic testing if you had genetic testing in the past, you tested negative, and the following applies to you:
- you had a test that only looked for one or a few genes, or
- you had genetic testing before 2014. Genetic testing has improved, and laboratories can now find gene mutations that may have previously been missed.
Ovarian cancer survivors and those in treatment should speak with a genetics expert to see if testing is right for them.
Genetic testing for relatives of people who have been diagnosed with , ovarian or primary peritoneal cancer
Genetic counseling and testing is also recommended for anyone with a first-degree or second-degree relative who has been diagnosed with any of these cancers at any age.
See our sections Testing Guidelines by Cancer Type and Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information.
finding-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
find-support
The following organizations offer peer support services for people with, or at high risk for ovarian cancer:
- FORCE peer support
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Private Facebook Group
- Virtual and in-person support meetings
- Join a Zoom community group meeting.
- LGBTQIA
- Men
- American Sign Language
- People of Color
- National Ovarian Cancer Coalition
- Ovarian Cancer Research Alliance
- Clearity Foundation
updated: 02/05/2022
paying-for-service
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.
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 .
- Ambry Billing and Insurance
- Color for All (Color's Family Testing Program offers $50 testing for relatives of people with a known mutation)
- Invitae Patient Assistance Program
- Quest Financial Assistance Program
- Natera Compassionate Care Program
- Myriad Cares
- Sema4 Financial Assistance
updated: 02/15/2022