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Making a decision about genetic testing

If you are thinking about genetic testing and wondering how to proceed, the following steps can help you make an informed decision and move forward with your plan. 

Speak with a genetics professional

Genetic testing can provide important, life-saving information. Seeing a genetics expert can reduce the uncertainty about whether you should have testing, which test to order, and what the test results mean for you and your family. This is the most reliable way to obtain up-to-date information and to formulate a plan. A genetics expert will not try to talk you into or out of  testing, but will support your decision. Genetic testing is a personal choice, but it's your choice.  

  • If you are sure that you want genetic testing, your best next step is to speak with a genetic counselor, who will make sure that the proper test is ordered, help to obtain insurance coverage for the test, limit out-of-pocket costs and make sure that your results are interpreted correctly. 
  • If you are undecided about genetic testing, speaking with a genetics expert can provide you with the facts, so that you can make an informed decision. A counselor will consider your personal situation and personal preferences and help you pursue the path you decide is best for you. 
  • If a doctor or a relative has recommended that you have genetic testing, but you have already decided not to pursue it, a genetic counselor can help assure that your decision is based on facts and in your best interest.

Ask your doctor for a referral to a genetics expert. If no expert is available in your area or if appointment wait times are too long, consider contacting one of the providers listed here, who can provide genetic counseling by telephone. 

Read the expert guidelines for testing

The National Comprehensive Cancer Network (NCCN) develops and regularly updates guidelines regarding who should consider genetic testing. Even if you don't think you meet the guidelines, you can still be tested. The most important next step is to speak with an expert in cancer genetics. 

Consider your personal situation

Your personal situation can affect how and when you proceed with genetic testing. 

  • If you are newly diagnosed with cancer or a recurrence, genetic testing may help you make decisions about treatment. 
  • If you have completed treatment for cancer, genetic testing may help you understand your risk for a new cancer diagnosis and affect your decisions about cancer screening and prevention. 
  • If you have never been diagnoosed with cancer, genetic testing can clarify your risk to help you make decisions about cancer screening and prevention. 

In all cases, testing can provide your relatives with information about their risk for cancer and options for managing that risk.

Learn about the cancer in your family 

If you are considering genetic testing, learning about your family medical history can help you and your healthcare team determine whether genetic testing is likely to be of benefit and which test might be best for you. 

  • Find out whether any of your relatives have already had genetic testing. If any of your biological relatives have tested positive for an , it's important to ask them to share their genetic testing laboratory report and any family medical history that they can provide.
  • If you are the first to have genetic testing in your family, you may have to collect your family medical history starting from scratch. Try to gather information about close relatives who were diagnosed with cancer, the type of cancer they had and their age at diagnosis. It is best to have this information at the time of your genetic counseling appointment. Pass on this information to any relatives who also decide to pursue genetic testing. 

Talk to people who have had testing 

It can be reassuring to speak with and get support from other people who have had genetic testing to hear about their experiences. FORCE has many programs to connect you with peers and trained volunteers who understand your situation and the decisions you are facing. You may want to speak with relatives who know you, your preferences and your priorities to gain additional insights.

Don't go it alone

Increasingly, testing for an  is available outside of the healthcare setting, without genetic counseling, and in some cases, without a doctor. Even though you may be tempted to the go the "Do It Yourself" route, we recommend that you begin by speaking with an expert in cancer genetics. 

Last updated November 27, 2023

Find Experts
Find Experts

The following resources can help you locate a genetics expert near you or via telehealth.

Finding genetics experts

  • The National Society of Genetic Counselor website has a search tool for finding a genetic counselor by specialty and location or via telehealth. 
  • 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. 
  • Gene-Screen is a third party genetic counseling group that can help educate, support and order testing for patients and their families. 
  • 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. 

Related experts

Genetics clinics

Other ways to find experts

updated: 07/21/2023

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: 03/16/2023

Open Clinical Trials
Open Clinical Trials

Below are clinical trials that include genetic counseling and testing.

Other genetic counseling or testing studies may be found here.

 

updated: 05/28/2023