Your genes contain powerful information. To the trained eye, they hold the keys to your future health and your risk of disease.
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But the power of genetics also comes with anxiety, especially when it comes to legal and insurance questions. Patients want to know what genetic information means, who can use it and — frankly — who’s going to pay for it.
Below are three of the biggest fears I hear from patients, as well as information that can help you put those fears to rest.
1. People will use my genetic information against me
If a genetic test shows you have a high risk of disease, can health insurers or employers discriminate against you?
The short answer: no.
The Genetic Information Nondiscrimination Act (GINA), which went into law in 2009, protects you from discrimination. So do certain parts of the Affordable Care Act, which includes protection for your genetic information.
“Patients want to know what genetic information means, who can use it and — frankly — who’s going to pay for it.”
Charis Eng, MD, PhD
Founding Chairwoman of the Genomic Medicine Institute
Because of GINA, most employers can’t use your family health history or genetic test results against you. They can’t use it to decide whether to hire you, fire you or promote you or to determine how much you get paid.
The same goes for health insurance companies. They can’t use your genetic information to decide whether you’re eligible for coverage — or how high your premiums should be.
But there are limits to the law. GINA applies to health insurance, but not to life insurance. On top of that, it does not apply to companies with fewer than 15 employees or to the U.S. military.
2. Insurance won’t cover it
This was true many years ago. But the pendulum is swinging now in favor of patients.
If your doctor recommends genetic testing, most insurance will cover it partially or fully. For example, a 2013 review of insurance companies found the vast majority have policies covering screening for BRCA mutations (breast cancer), Lynch Syndrome and familial adenomatous polyposis (FAP). If you’re at risk for these genetic conditions, your insurance should cover testing.
Why? Because these tests are accurate, effective and backed by evidence. Insurance companies know this. They also know that paying for colonoscopies at age 25 for a patient with Lynch Syndrome costs less than paying to treat cancer that has spread later in life. Appropriately, many insurance companies now also ask for genetic counseling as a prerequisite to covering genetic testing.
When in doubt, ask your insurance company what they cover. If you run into trouble, your genetic counselor or genetics physician can help. For example, we often write letters of medical necessity for patients to explain why a particular test is necessary.
3. I won’t know what to do with the results
Genetic medicine is complicated, especially if your last science class was decades ago.
Never fear: You don’t have to interpret the results of genetic screening on your own. Neither does your primary care doctor. That’s what geneticists and genetic counselors do.
Genetic counselors start by educating patients before ordering any genetic tests. In fact, they walk through your family and personal history first to see what tests — if any — are necessary.
They also explain what having a genetic mutation means. If you are at high risk for cardiovascular disease, for example, they will help connect you with heart specialists for monitoring. If you have a high risk of cancer, they help you weigh your options, from “watchful waiting” to preventive treatments.
In fact, genetic counseling is so important that many insurers now cover it. In some cases, it’s actually part of the law. For example, the ACA includes breast cancer genetic counseling for high-risk women as a preventive service.
Genetic counseling helps eliminate “trial and error” medicine, which is why insurers recognize its value. Keeping you healthy isn’t just good for you — it’s good for a payer’s bottom line.
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