What the Heck is a Genetic Counselor?
No, we’re not psychologists for your genes, and we can’t order a designer baby for you. So what is a genetic counselor, anyway? Genetic counselors are like ambassadors between the world of genetics and you. We are trained medical professionals that are here to help you understand and navigate genetic services that fit your needs. We assess your situation for things you might be at risk for, explain what options you have to check for those things, and make sure whatever option you choose gets done.
What is seeing a genetic counselor like?
People see genetic counselors for many reasons. They might be planning a pregnancy, they may have been recently diagnosed with cancer, or their doctor might be suspicious that they might have a genetic condition. All of these situations are very different from each other, but the basic genetic counseling session has a similar format across all of them.
When you first meet with a genetic counselor, she (or he) will likely start out by asking you some questions and drawing a family tree (we call it a pedigree). We take this information about you and your family and use it to give you an accurate risk assessment. Some of the questions get personal, and some are flat out weird, but they all have a point. I promise we’re not just being nosy. Sometimes genetic conditions can have some strange symptoms, so don’t be offended if you’re asked how many birthmarks you have, or if you have freckles on the inside of your lips. Things that may seem benign to you might mean something to us.
But also don’t be worried if you end up answering “yes” to a lot of our questions. Most families have features that can be seen in genetic conditions, but most people with those features are perfectly healthy. What we’re looking for are certain patterns; connecting dots you never thought needed connecting. Like the fact that those bumps on your hands and your sister’s thyroid cancer might actually be caused by the same gene.
Once we’ve finished our assessment, it’s time to explain what you might be at risk for. This news can sometimes be surprising. It may turn out that the thing your grandpa has that you were sure you were going to get because it “skips a generation” has almost no chance of happening to you. Or there might be something going on in your pregnancy that puts you at high risk for a problem that’s never happened in your family before. Some things may be easily ruled in or out with a physical exam or an ultrasound. Others might need specialized genetic tests to give a definitive answer. The counselor will explain your testing options, their pros and cons, and what the possible results could mean to you.
In general, genetic counselors don’t like making recommendations about genetic testing decisions. Our goal is to give you the information you need to make your own choices about which tests to pursue, if any. Just like our questions, these decisions get very personal. They often don’t only impact you, but the whole family. You may decide to pass on testing for now, or you could wish you had done this years ago. The path that’s right for you might be clear right away, or might take some time to figure out. Your counselor is there to help you work through these decisions.
Once your decisions have been made, genetic counselors are typically the ones who coordinating the testing. They determine which labs to send samples to, make sure the correct testing is ordered, and often are in charge of making sure your insurance will pay for it. Since testing of a single gene can easily cost over a thousand dollars, you really want to make sure this is done right. Once the results are in, we make sure you understand the results and any further action that needs to be taken.
If all of this seems like it’s going to take a while, that’s because it does. Genetic counseling sessions can last anywhere from 15 minutes to 2 hours. Doctors typically just don’t have that kind of time to spend with each patient, but we do. So, if your doctor suggests you need to come see us, please don’t be afraid. Our goal is to educate you enough to take control of your own health care decisions. It’s your family, your genes, your life. The biggest questions is, how much do you want to know?