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

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
finding-experts

Health care providers who are specially trained in genetics can help you more clearly understand your risk for hereditary cancer. Geneticists are doctors with specialized expertise in hereditary diseases. Certified genetic counselors are health care professionals who have had specialized training and have earned a Master's degree in genetic counseling.  Oncologists and nurses who have received advanced training in genetics may provide genetic counseling. 

There are several ways to find a genetics expert:

  • 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. 
  • Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone. 
  • Advanced Tele-Genetic Counseling offers genetic counseling via telehealth. 
  • The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors. 
  • FORCE's toll-free helpline at: 866-288-RISK, ext. 704, can connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and hereditary cancer and help you find a genetic counselor 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. 
Last updated July 21, 2020