I've Tested Positive, Now What?
Hereditary Cancer and Genetic Testing > How To Get Testing > Genetic Counseling
Why is genetic counseling important?
Consulting with an expert in cancer genetics is the best way to ensure receiving the most up-to-date and credible information. Genetic counseling consists of an appointment with a genetics expert in-person, by telephone or by video. Genetic counseling usually involves an in-depth discussion of the following:
- Your personal and family medical history
- The benefits and limitations of genetic testing
- Genetic privacy and discrimination laws
Once they evaluate your personal and family medical history, a genetic counselor will discuss other tools that may further clarify your risk for cancer, including genetic testing. A genetic counselor will not try to talk you into or out of testing but will discuss its benefits, risks, costs, and limitations.
Genetic counseling before genetic testing
If you decide to proceed with genetic testing, the counselor will:
- Fill out the paperwork and assure that the proper test is ordered.
- Work with your insurance and the testing facility to assure coverage for the test or help you find resources for low-cost testing if insurance won't pay.
- Collect either blood or a cheek swab sample for the test and submit it to the appropriate laboratory.
Genetic counseling after genetic testing
Once your results have returned from the lab, the counselor will schedule a post-test disclosure apppointment. This appointment is important; the genetic counselor will:
- Interpret and explain test results and what they mean for you and your relatives
- Provide you with your cancer risk estimates based on your test results
- Outline appropriate cancer risk management and treatment options
- Provide referrals to for follow-up screening and risk management, and suggest any relevant clinical trials
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.
- 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.