I Want to See a Genetic Counselor – How Do I Make That Happen?
Imagine that a close female relative has just been diagnosed with breast cancer. Or, maybe you’re pregnant and your doctor has ordered genetic tests but you don’t really understand why. Perhaps you’re considering starting a family but you’re worried about conditions that may run in your family.
These are all reasons you might want to meet with a genetic counselor. But your doctor hasn’t suggested it, and you’re not sure what to do.
I want to share some insights to help you decide if genetic counseling might be helpful and, if so, how to find a genetic counselor and make the genetic counselor part of your overall healthcare team.
Why should I see a genetic counselor?
Genetic counselors are healthcare providers with specialized training in genetics. We review a person’s family history, explain the various genetic tests and what they can and can’t tell you, analyze test results and explain what they mean. Part of our job is to help people decide whether to have genetic tests in the first place. We explain what they’ll learn and help them think through how they’ll use the information the tests give them.
You should see a genetic counselor if you have any questions or concerns about your health – or the health of family members – that might be related to genetics, or family history, or whether to have genetic testing.
How do I find a genetic counselor?
Many times, genetic counselors are able to see patients who refer themselves to the appointment to discuss their concerns. You may find a genetic counselor near you to meet face to face or via a telephone consultation by going to FindaGeneticCounselor.com.
Your doctor can also help you find a genetic counselor and may refer you to someone he or she thinks would be right for you.
How do I tell my doctor I want to see a genetic counselor?
Sometimes people aren’t sure if they should see a genetic counselor and are looking for their doctor to guide them, either to agree that it’s a good idea, or help decide that the consult would not be necessary. Many people are hesitant to ask about genetic counseling; here are some common reasons:
- The doctor ordered genetic tests and explained the results, but you want more time to discuss what they mean and what your treatment options are. You feel uncomfortable telling your doctor you want to talk with someone else.
- You decided on your own to get at-home genetic testing, possibly against your doctor’s recommendations, and don’t understand the test results or are alarmed by them.
- Your doctor has said you don’t need genetic tests but you’re concerned about something in your family history and you want a “second opinion.”
Whatever the reason, and whether or not your doctor was involved in ordering genetic tests you may have had, he or she will still want you to have the best answers to your questions. It’s reasonable to ask to see a genetic counselor to understand the genetic test results and how they apply to you and your family.
To help start the conversation with your doctor, write a list of the relatives who have a health problem you’re concerned about, and their age at diagnosis. You may also wish to draw a family tree as it can be easier to spot a trend in a picture format and can facilitate the discussion. The NSGC website has a resource to help guide you about the information that is useful to collect. Once you have collected the information, share it with your family members so that they too can benefit from your efforts.
Before your appointment with your doctor, it is helpful to write down the trend you noted in your family history and the items you think contribute to the trend. If during your appointment you are nervous or are worried you might forget something important, this process will help you feel prepared.
Will insurance cover my genetic counseling?
Many insurance plans will cover counseling by a genetic counselor, but some will require a referral from your doctor. Check your policy and then talk with your doctor to see if he or she will make a referral or can otherwise advocate for you.
Remember, a genetic counselor can help you determine if the trends in your family are likely to impact your health. Share FindaGeneticCounselor.com with your provider and request the referral.
Joy Larsen Haidle, MS, LGC, is immediate past-president of the National Society of Genetic Counselors and a genetic counselor at Humphrey Cancer Center in Robbinsdale, Minn.