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Can Life Insurance Companies Get Your Genetic Test Results?
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Can Life Insurance Companies Get Your Genetic Test Results?

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Can Life Insurance Companies Get Your Genetic Test Results?

When you apply for a life insurance policy, the insurance company will gather information about you—a lot of information.

It will want to know the basics, such as your age and sex. It will want to know your occupation, your smoking habits and whether you have any risky hobbies. Most importantly, the insurer will need plenty of details about your health, the prescription drugs you take and even your family’s medical history (parents and siblings).

Insurers need this information to determine how much of a risk you are to insure—that is, how likely you are to die prematurely. So it would make sense that insurers would want to know the results of any genetic tests you’ve taken, right? After all, those tests could give them insight into whether you might develop a life-threatening disease.

Does that mean, though, that taking an at-home DNA test such as one from 23andMe or Ancestry could hurt your chances of getting life insurance? Here’s what you need to know about whether insurance companies can see applicants’ genetic test results and how they can use that information.

Regulations Related to Using Genetic Information

The Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits health insurance companies from using genetic information to make coverage or rate decisions. However, GINA protections do not extend to life insurance, disability insurance or long-term care insurance. So there is no federal law that limits the use of genetic information by life insurance companies.

Legislation has been proposed in several states, but Florida is the only state that has enacted a genetic privacy law that prohibits life insurance companies from canceling, limiting or denying coverage and from setting different premium rates based on genetic information. In California, Gov. Gavin Newson vetoed a genetic privacy bill in September 2020.

Consumer privacy advocates argue that there need to be more regulations to limit the use of genetic information by insurance companies in order to protect privacy and prevent discrimination.

“There’s probably nothing more personal than your genetic information,” says Susan Grant, director of consumer protection and privacy at the Consumer Federation of America. “Of all the kinds of sensitive data there may be about people, that’s right up at the top of the list.”

The insurance industry, on the other hand, claims that consumers benefit when insurers have this information.

“Many people are afraid that life insurers want to use genetic tests to rate or decline applicants,” says Dr. Robert Gleeson, a former medical consultant for the American Council of Life Insurers (ACLI). “That’s the furthest thing from the truth. Life insurers want to sell as much life insurance to as many people as possible at as low of a rate as possible.”

At-home genetic tests put life insurers at a disadvantage when pricing policies: Consumers who suspect from an at-home genetic test that they are predisposed to illness might be more apt to buy life insurance without disclosing the genetic information to the insurance company.

Genetic Test Results That Insurers Use

Life insurance companies want information about applicants’ health. So they’re not interested in the results of direct-to-consumer ancestry tests. “Those things have nothing to do with mortality or your health,” Gleeson says.

“We don’t know the reliability of that information or the accuracy of the test,” Gleeson says.

According to the ACLI, if an insurer asks about genetic tests on a life insurance application it would only be interested in an at-home test if your results came back with a recommendation that you contact your doctor about a particular result. And even then, an insurer would want the result confirmed through a doctor-ordered genetic test.

A 2018 study published in Genetics in Medicine found that 40% of gene variants identified by direct-to-consumer kits were false positives. And some genetic variants that were called “increased risk” by the DNA companies were classified as benign and common by clinical labs.

The type of genetic tests that insurers are interested in are those ordered by medical providers. Typically, genetic testing is done by doctors only when a patient has a family history of a disease or as a diagnostic tool, not just because someone wants to find out if he or she is predisposed to certain conditions, Gleeson says.

The results of such tests would be included in a patient’s medical records. Any information in your medical records is accessible by insurance companies when you apply for a policy and grant them access to your records.

How Insurers Use Genetic Test Results

To be clear, if you already have a life insurance policy, the results of any genetic tests you take won’t affect your existing coverage. That means your insurer can’t drop you if you take a test that shows that, say, you’re predisposed to a certain type of cancer.

When you’re applying for life insurance, genetic test results can actually work in your favor in some instances. The insurance company will ask about your family’s medical history on the application for coverage. So if you report on your application that, for example, your mom had breast cancer before the age of 50, your “mortality risk” would be considered higher.

However, if you took a genetic test and the markers for breast cancer were negative, your family history would be forgiven, Gleeson says. If the test were positive, you’d be no worse off in the eyes of the insurer than without the test, simply due to your family’s medical history.

Even positive tests can work in your favor if you’ve taken steps to reduce the risk of developing disease. For example, if you’re at risk of developing colon cancer and have had regular colonoscopies to find any sign of the disease early, the insurer might consider it positive that you’re taking action. It would be a bigger strike against you if you hadn’t taken any steps to stay on top of your health after receiving positive genetic test results, Gleeson says.

Should You Get Genetic Tests?

Don’t let fears about the impact that genetic tests might have on your ability to get life insurance prevent you from taking necessary tests. If your doctor thinks it’s important for you to be tested to understand your risk, have the test done so you can get the proper care, Gleeson says.

If you’re considering buying life insurance and you’re also thinking about doing an at-home genetic test from a direct-to-consumer provider such as 23andMe, apply for and buy life insurance coverage first. There’s no need to raise red flags if you don’t have a negative family medical history.

If you do have positive test results from a doctor-ordered test and are shopping for life insurance, work with a knowledgeable life insurance agent who will know which insurers are best for your application.

“Different companies have different ways of looking at risk,” Gleeson says.

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