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.
- Know the signs of an
- Speak with a healthcare professional with expertise in cancer genetics
- Read the expert guidelines
- Consider your personal situation
- Speak with your peers
- Learn about your family's medical history
- Don't go it alone
- Consider low-cost testing options if insurance won't cover it
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.
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.
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.
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.
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.
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.
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
Below are clinical trials that include genetic counseling and testing.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women age 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- NCT04476654: Improving Uptake of Genetic Cancer Risk Assessment in African American Women-Video. This study looks at the usefulness of intervention with a culturally-tailored video to improve uptake of genetic counseling in Black women who are at increased risk of .
- NCT05694559: Connecting Black Families in Houston, Texas to Genetic Counseling, Genetic Testing, and Cascade Testing by Using a Simple Genetic Risk Screening Tool and Telegenetics. This study will provide genetic testing to 150 Black individuals and families and provide genetic counseling and risk reduction resources to individuals with a mutation linked to increased cancer risk.
Other genetic counseling or testing studies may be found here.