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Lawmakers Look To Ensure Genetic Tests Won't Affect Insurance Coverage

Rep. Jason Brodeur (R-Sanford) speaking in the House Health and Human Services Committee.
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.
Rep. Jason Brodeur (R-Sanford) speaking in the House Health and Human Services Committee.
The Florida Channel
Rep. Jason Brodeur (R-Sanford) speaking in the House Health and Human Services Committee.

Florida lawmakers are looking to ensure genetic tests won’t affect eligibility for insurance coverage. The House Health and Human Services Committee unanimously passed a measure preventing insurance companies from using genetic information when making policy decisions.

Genetic testing kits, like those from Ancestry dot com and 23andMe, were among the most popular Christmas gifts of 2017. These tests use DNA samples to trace family history, and a few like 23andMe even provide information about possible hair loss or risk for certain diseases.

But some worry these tests could be used by insurance companies that either affect chances of coverage or the premiums paid.

Under federal law, health insurance companies cannot charge higher premiums or make coverage decisions based solely on genetic information. But, these provisions don’t extend to other types of insurance, like life insurance.

A measure in the Florida House would Florida law to include life, long-term care and disability insurance. It prohibits providers from canceling, limiting or denying coverage or from setting higher premiums based on genetic information. The prohibitions wouldn’t apply if a person has already been diagnosed with a condition.

This didn’t come about because anyone did anything wrong or I’m mad," says Rep. Jason Brodeur (R-Sanford). "This is a personal protection thing of now that these tests are everywhere, what are we going to do with this information? How are they going to be used?

But the Florida Insurance Council’s Paul Sanford argues genetic tests should be able to be used for quote “proper purposes.”

"There are several tests where if a gene is present there is a 100 percent probability that you’re going to get that disease," says Sanford. "And one of those diseases like that is Huntington. So the genetic test is actually a diagnosis in that case, and we couldn’t use that under this bill.”

Sanford worries people who learn they are predisposed to these types of illnesses will then buy insurance, but won’t have to disclose the results of the genetic test.

"The first thing, quite frankly, you do is run down and buy your life insurance policy and long-term care policy to make sure you get things paid for," Sanford says.

Some DNA companies stipulate that the results of genetic tests are proprietary information, meaning they retain ownership of the results. But Rep. David Santiago (R-Deltona) worries that information can then be sold to insurance companies.

“They could then sell this information to whatever databases that many could query," says Santiago. "So in that scenario, that I just described, then it could then be used in underwriting.”

As the bill currently stands, insurance companies can ask if you have taken a genetic test but you don’t have to answer or disclose the results of the test. However if you answer yes, even if you do not share your genetic information, it can affect your chances of getting a policy or the rates you are offered.

Additionally, the results of a test cannot affect an existing policy for the extent of the term, but can be used upon renewal.

Copyright 2020 WFSU. To see more, visit WFSU.

Shawn Mulcahy is a junior at Florida State University pursuing a degree in public relations and political science. Before WFSU, he worked as an Account Coordinator at RB Oppenheim Associates and a contributing indie writer for the music blog EARMILK. After graduation, he plans to work in journalism or government communications. He enjoys coffee, reading and music.