Should genes determine what type of coverage you have? Debate is on.

The Senate Banking and Insurance Committee voted 5-3 to advance Senate Bill 258, which would prohibit insurers from using genetic information to make a decision about granting or limiting coverage.
Senato Aaron Bean, R, during the 2014 Florida Legislative session.
Senato Aaron Bean, R, during the 2014 Florida Legislative session.
Published March 12, 2019

As interest in commercially available genetic testing kits continues to rise, Florida senators are considering a proposal that would ban genetic test results from being used to deny or limit someone’s life, disability or long-term care insurance coverage.

But the bill, which narrowly passed its first state Senate committee stop Monday, faces an uphill climb as some lawmakers and insurance lobbyists say the potential ban would hurt the industry’s ability to anticipate and calculate future risk.

The Senate Banking and Insurance Committee voted 5-3 to advance Senate Bill 258, which would prohibit insurers from using genetic information to make a decision about granting or limiting coverage, though some lawmakers on the committee said the bill would need substantial revision to guarantee their future approval.

Supporters say the bill protects people’s privacy and falls in line with the federal government’s ban on health insurers using that information to make a decision about someone’s health coverage. That ban does not currently extend to life, disability, or long-term care insurance.

But opponents, many from the insurance industry, cast the bill as unripe amid a still burgeoning genetic testing marketplace and warned that a wholesale ban on the use of such tests in underwriting could cause rates to rise substantially in Florida compared to the rest of the country.

Sen. Aaron Bean, R-Fernandina Beach, who is sponsoring the bill, told fellow lawmakers that the bill was meant to protect people who were paying for genetic testing and might not know how their information would be used.

People who are taking genetic test kits “believe that information is private — they would shudder to think that kind of health information could be sold without their knowledge,” he said. He pointed to the outpouring of ads for genetic testing being broadcast and shared online and that people are unaware of the potential consequences of taking such a test.

“The door is open right now for DNA test results that you think are private that indeed are not private,” he added. “What this bill does is protect the privacy of Floridians to say no to building dossiers behind our backs.”

The Genetic Information Nondiscrimination Act, a federal law passed in 2008, largely bars health insurers from using genetic information, if a genetic condition is not already diagnosed, to make a determination denying or limiting coverage to patients. Health insurance companies are also barred from asking for or requiring such genetic information for insurance reasons.

But there is no such prohibition for determining life, disability, or long-term care insurance. Bean said he wanted to pre-empt the continually rising interest in genetic testing from working against those who are seeking insurance as that industry grows.

Some speakers on behalf of the insurance industry said Monday that the industry does not currently buy or seek access to such tests, citing their narrow scope. They also asserted that passing the bill as written would significantly change the insurance landscape in the state.

“The bill incentivizes fraud and dishonesty,” Robert Gleeson, a physician and past medical director of Northwestern Mutual Life Insurance, told the committee, adding that it would set a standard of requiring insurance underwriters to ignore “important medical information.”

“No other state has adopted such a ban on medical underwriting life insurance,” he added.

Sen. Tom Lee, R-Thonotosassa, asked about a potential compromise where those who had taken genetic tests would be obligated to disclose those results, but people would not be compelled to take the tests in the first place, which Gleeson suggested might more fairly level what he called the potential “asymmetry of information.”

But he and others who addressed the committee also said that the genetic testing industry is too young to yet fully predict how such legislation might play out in the future. Patricia Born, a Florida State University business professor specializing in risk management, asserted that keeping genetic information private could skew the insurance market in favor of individuals “who think they have a higher mortality risk” and threaten the ability of insurers to pay death claims for larger pools of those insured. “We’re not thinking about one individual, we’re thinking about a lot of Floridians.”

Sen. Jeff Brandes, R-St. Petersburg, who was among three senators who voted against the bill, raised questions about the ownership of genetic information and how such restrictions might play out.

“Is my DNA mine? And if I use it, is that then speech? And can I share that speech with someone?” he asked rhetorically. He questioned what might happen should the state pass the bill and genetic testing become mainstream: “I think this is the decision that we make that may have massive ripple effects.”

Sen. Doug Broxson, R-Pensacola, who chairs the committees, raised another concern: “I think you’re setting a standard that is yet to be determined on the issues that have not yet developed.”

But he and several lawmakers on the committee said they would tentatively support the bill to see it debated in future committees.

Lee, who voted for the bill, acknowledged that the legislation is unlikely to pass in its current form. Bean said before the bill passed he was open to suggestions to address concerns about the bill.

The bill has two more committee stops before it reaches the Senate floor.