When it comes to genetic testing, it can get complicated in a hurry. Imagine sending in a DNA test hoping to find out what percent German you are and getting back a result that says you have an increased risk for cancer. That news can stop anyone in their tracks.
Because of the potential significance of genetic testing, a thoughtful and individualized approach to testing is required. Genetic counseling should be a vital part of the process, both before you send in that DNA sample and after.
You may be surprised to learn the pros and cons of genetic testing and just how much you should consider before diving in. There is a lot more to think about than you might think. That’s where genetic counselors come in.
According to the National Society of Genetic Counselors, there are close to 5,000 certified genetic counselors today. They are professionals who “have specialized education in genetics and counseling to provide personalized help patients may need as they make decisions about their genetic health.”
Why are they important? Consider these two reasons.
Genetic testing is not for everyone. Before you send in that DNA sample, you should be prepared for every potential outcome. The results could affect not only you but also your family.
You might be stressed out. You might be relieved. You might have financial obligations to consider. There are even privacy concerns to think about regarding what these direct-to-consumer companies do with your data.
A genetic counselor can walk you through all the scenarios beforehand to make sure genetic testing is the right move for you.
For some, they will alleviate their concerns and the testing will proceed as planned.
Others might have second thoughts and decide it actually isn’t right for them. Regardless, a genetic counselor is there to make sure you choose the right path for you.
Interpreting the results of any genetic test is critical. You send in a sample of your DNA and get back a list of medical jargon that can be difficult to put into any context.
Genetic counselors can help interpret these results and discuss with you how they fit with the rest of your life.
Why take the test if you don’t have the counseling available to make the most of the results?
Knowledge of genetic variants is evolving, so the results can be challenging to understand, even for medical doctors if they have not received specialized training in genetics. It’s not as simple as a positive or negative test result.
The test could also reveal a variant of uncertain significance (VUS), which means we don’t know the impact of that specific variant.
Then you have to look at other symptoms and factors, such as your current health situation, to decide what comes next.
This can all be a lot to process on your own. That’s why genetic counselors exist; they are trained in both medical genetics and counseling. Once the results come in, genetic counselors work with your doctor to provide both clinical and emotional advice.
Clinically, they can recommend treatment options, further tests, lifestyle changes, or other next steps. Emotionally, they offer supportive counseling to talk through feelings and difficult situations, including communicating with potential family members who might also be at risk.
How often you see a genetic counselor varies. It may just take one discussion both before and after testing to get all the help you need. Or you might have several concerns that take multiple meetings to sort through before or after a test.
How much counseling you need after genetic testing largely depends on the results. Does everything look as expected? You probably only need one session.
Did the test reveal an increased risk for a major disease for you and your family? Then, it might take more than one session.
As far as the cost of genetic counseling, health insurance often covers it if the testing is recommended by a doctor or genetic counselor. It’s always safe to check with your insurance company to verify what, and how much, they will cover. If your insurance doesn’t cover genetic counseling, sessions range from $125-$500.
At PartnerMD, we are excited to help you navigate genetic testing and genetic counseling. Our members work with their PartnerMD physician and a certified genetic counselor to make an informed personal choice regarding genetic testing.
If you decide to proceed with genetic testing, all testing will be facilitated at an accredited lab. Once test results are available, you will receive additional genetic counseling to help get the most out of the results.
If you’re still unsure, free to check out these resources for more information on genetic testing: