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Can Insurers Use Genetic Testing Results? A Reader Wants To Know

| KHN

This week, I answer questions from readers concerned about health insurance roadblocks in the face of a serious illness or medical crisis.

Q: I think genetic testing could be a great tool for physicians. My fear is what the insurance industry will do with the information, especially in today’s political climate. Could they decide that you have a preexisting condition and charge a higher rate, or not cover you at all?

No, they can’t do that — not now, anyway. Under the Genetic Information Nondiscrimination Act (GINA) of 2008, health insurers can’t use your genetic information, including your family medical history, genetic test results and genetic counseling or other genetic services, to discriminate against you.

That means health insurers can’t use your genetic information when making decisions about your eligibility for health insurance, coverage terms or how much you’ll pay.

If you develop symptoms of a disease or are diagnosed with a medical condition, however, GINA no longer protects you. That’s where the Affordable Care Act steps in. It prohibits health plans from turning people down or charging them more because they have a preexisting condition.

“GINA did something good, and the ACA was the next important step,” said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law.

However, last month the Trump administration said it won’t defend that part of the law, which is being challenged in a lawsuit brought by the attorneys general of 20 states.

The administration said that since the penalty for not having health insurance has been eliminated starting in 2019, the provisions that guarantee coverage to people with preexisting conditions and prohibit insurers from charging them higher premiums should be struck down as well.

The issue is a priority with voters. In a June poll by the Kaiser Family Foundation, two-thirds of voters said that continuing protections for people with preexisting conditions was either the single most important factor or very important in their vote during the elections this fall. (Kaiser Health News is an editorially independent program of the foundation.)

Q: My husband fainted in the middle of the night. He received an MRI at a hospital emergency department in Kingston, N.Y., that is not in our insurance network.

Two months later, we received a bill for $23,657.39. Our insurance company paid $3,226.40, or 90 percent of what they considered to be a reasonable cost for the services provided. Our bill was for the balance.

Even though New York has a law that protects consumers against surprise medical bills, I learned that it doesn’t apply to us because our health plan is “self-funded.” Is there anything else that we can do?

You’re in a tough spot. The ACA prohibits most plans from charging consumers more in copayments and coinsurance for out-of-network emergency care than they’d owe if they were at an in-network facility.

But federal law doesn’t prevent out-of-network providers from billing consumers for the balance when a health plan doesn’t pay in full. This can happen because the plan doesn’t have negotiated rates with providers that aren’t in the network.

New York is one of six states that have laws with comprehensive protection for consumers against so-called surprise bills, according to an analysis by researchers at Georgetown University’s Health Policy Institute that was published by the Commonwealth Fund last year.

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