What is Genetic Counseling and Testing?


Has anyone else heard a lot about genetic testing lately? Between every other friend getting a 23andMe test (amiright?), cold cases being solved with genetic testing, and Angelina Jolie getting a double mastectomy as a result of testing positive for a certain type of breast cancer gene, genetics are top of mind.

We realized that the world of genetics was out of our realm of healthcare knowledge, so we called up a professional and spoke to a certified genetic counselor. She talked us through the ins and outs of what you need to know when it comes to genetic testing and dealing with a genetic counselor.

Full disclosure, this article is a little longer than most Healthcare Hustlers posts so we summarized the takeaways below:

TLDR: If your doctor offers a genetic test, ask to be referred to a genetic counselor to talk through your options. If they don’t know of any counselors, check out National Society of Genetic Counselors (NSGC)’s website to find one in your area. Call your insurance to make sure genetic counselors are covered under your plan and find one that is in-network.

Most genetic counselors believe that patients have the right to make decisions for themselves, and are willing to work with the patient, labs, and insurance plans so patients understand the costs and results associated with the testing.

Now for a deeper dive into genetic counseling

What is genetic counseling, and what makes it special?

A genetic counselor (GC) is someone who advises families and individuals affected or at risk for genetic disorders. Not only do they help explain genetics and test results in a targeted approach for a particular patient, but they also act as a support system and advocate for their patients when it comes to dealing with insurance and expenses.

We were also told that the genetic counseling community is proud about it’s non-directiveness, i.e. making sure patients fully understand all of their medical options, including pricing, and allowing them to choose their next steps on their own. Unlike the often prescriptive nature of many healthcare practitioners, GCs try to give families comprehensive information in the most unbiased manner possible so that the family can make the best decision for themselves. Once that decision is made, GCs support the patient’s decision.

In order to become a GC one needs to do a two year master’s program in genetic counseling and take a certification exam upon completion of the program. Some states allow GC’s to get their license, which ultimately affects how genetic counselors bill for their services, i.e. independently or under a doctor. While GC’s are not doctors, they do tend to work closely with hospitals, doctors, and geneticists (doctors that have additional training in genetics).

Who should see a Genetic Counselor?

Good candidates for genetic counseling and testing are typically those that are at higher risk of inheriting a genetic disease or being a “carrier” of a genetic disease, i.e. you have a family history of a genetic disease in one or multiple relatives or are from an ethnic background that increases the likelihood of “carrying” certain genetic diseases.  “Carriers” of a genetic disease are not typically affected with the disorder themselves, but are at risk of having a child with that disease if their partner is also a “carrier.”

Additionally, more people who are aware of genetic disorders in their families are participating in preconception counseling, where they discuss the risk of passing that disorder along to their child. Healthy individuals with no family history of genetic disorders typically do not need to see a genetic counselor, but if they have questions or concerns about their family’s health history, it is recommended that they call a genetic counselor to determine if a visit would be appropriate.

Don’t Genetic Counselors cost a lot of money?

A visit to a GC could be billed as a genetic counseling visit or as a doctor visit, depending on the state and how the office codes the service.

Genetic testing is billed separately, as the test is sent to a genetic testing lab. The same test could cost a few hundred dollars at one lab, and several thousand at a different lab. This all depends on whether the lab is in or out-of-network with your insurance, what their contracted rate is with your insurance company, and what your benefits for that test are. Sound complicated? Genetic counselors often step in at this point to work with your insurance company and the genetic testing labs to determine which lab will be most cost-effective, and if there are options for financial assistance. Do not be afraid to ask your GC for guidance - that’s what they are there for!  

Why shouldn’t I just see my primary care provider for genetic testing?

While the medical community is becoming more proactive about genetic testing, our GC said that she has run into instances where doctors are not aware of the pricing or alternative tests that can be performed to save patients money or might be more appropriate given the patient’s health indication. Also, doctors who aren’t trained in reading genetic test results may accidentally create more stress and fear with a patient due to the complexity of the results. GC’s are specifically trained to educate patients on their results and impact to themselves and family members, as well as to empower patients to make their own decisions regarding their genetic health.

How do I find a genetic counselor?

The two easiest ways to find a genetic counselor are by asking your doctor, or by searching on the National Society of Genetic Counselors (NSGC)’s website. Here you can search by state, pull up a genetic counselor’s contact information, and contact them directly (but again, call your insurance to make sure you are covered).

While we have a lot more information on GC’s and genetic testing that we want to share, we hope this covers the basics. Stay tuned for more information on genetic testing in future blog posts and comment below if there is something specific that you would like to know about.

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