Should You Get Genetic Testing for Disease?
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Weighing the pros and cons of genetic testing for my breast cancer risk
My mom was diagnosed with breast cancer when she was 48. Since then, three other relatives on my mother’s side of the family have been diagnosed with breast cancer. Often I’ve thought that it isn’t a matter of if I get breast cancer but when. Recently, I have had my own issues and concerns with my breast health, and in the process of figuring things out, my doctor had me tested for the BRCA1 variation—a known genetic mutation that greatly increases your risk of breast cancer. I am BRCA1 negative, so I do not have this particular mutation. But, as my doctor told me, “That is one known mutation; it does not mean that it is the only mutation. We will treat you as if you are genetically predisposed to breast cancer.” So what does that mean for me? What should you do if it’s possible you could also be genetically predisposed to a disease?
Testing versus family history
Your doctor may recommend genetic testing if you have a particular pattern of disease in your family history. For me, it was the above-average occurrence of breast cancer on my mom’s side of the family. The problem with testing is that your insurance company may not cover it. Costs can range from $100 to $2,000, which, for most Solo Moms, can be out of reach. However, your doctor may alter your care solely based on your family history, and you may not need the testing. Obviously, testing gives you a definitive answer, but as my doctor said, testing isn’t all inclusive, and sometimes family history alone is enough for your doctor to alter your care.
How does this affect me?
So let’s say you have the testing, and it is determined you have a genetic predisposition to a certain disease. Or maybe, like me, your physician feels your family history is abnormal enough to assume there is a genetic factor at work, whether it can be tested for or not. What does that mean for you?
Lifestyle changes. Your doctor may recommend some lifestyle changes. For example, if your family history shows a predisposition to liver disease, she may suggest you limit your intake of alcoholic drinks. If there is a genetic predisposition to heart disease, you would definitely want to keep your weight within a healthy range and exercise regularly.
An increase in screenings. I get a mammogram every fall and a breast MRI in the spring. This monitoring is fairly aggressive, and although it is not within standard guidelines, my insurance covers the cost. My physician had to speak with the insurance company, and yours may need to as well. But once my doctor made clear the reasoning behind the aggressive screening, my insurance company complied.
Medications. Your doctor may recommend medications to take to reduce your risk of developing certain diseases. Discuss the pros and cons and side effects carefully with your physician, and make a determination together.
Will my insurance company drop me if I test positive?
One of the fears many people have about genetic testing involves their insurance carrier dropping them if they test positive for a disease. To guard against this, the federal government passed the Genetic Information Nondiscrimination Act in 2008. This law protects people from being discriminated against by either their insurance company or employer. So if you test positive for a genetic difference that can cause disease, your insurance carrier cannot drop you.
I don’t want to know; it will just make me anxious
No doubt it can be a bit nerve-racking to learn that your chances of getting a certain disease are higher than that of the general population. But let’s be honest—you already knew that. You have already looked at your family history and thought, Wow—this doesn’t seem normal. There is a reason you are reading this article or talking to your doctor. And although it may make you anxious, information is power, and having a solid plan of attack can do quite a bit to alleviate that anxiety. If you have looked at your family history and felt an inevitability about getting a certain disease, you now know the steps you can take to challenge the disease. There are many factors that are within your control. Work closely with your doctor, and develop a course of action that will make you feel less like a powerless victim waiting for a disease to strike and more like a proactive patient in control.
As a Solo Mom, you are responsible for so much. Everything rests on you. And it may feel like genetic testing is just one more thing you have to worry about. But if you take this knowledge and act on it now, then you can feel less anxious about your health in the long run—and that is a good thing.
Julia Liu is the daughter of a Solo Mom and has a degree in professional communication. She is the mom to two sons. She has worked in early-childhood education and was the director of a nonprofit private preschool for many years. You can follow her on Twitter at @notaDNB1.
Please feel free to contact us with any comments or questions.
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