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Hands off our genes: House panel OKs genetic privacy bill

“The bill incentivizes fraud and dishonesty.”

Legislation aimed at stopping genetic testing from being used by life insurance companies against customers cleared the House Insurance and Banking Subcommittee Tuesday.

Rep. Jayer Williamson’s bill (HB 879) would stop life insurers from yanking, lifting or denying coverage based on test results from companies like 23andMe.

Health insurers are already prohibited from using genetic testing to fix rates, Williamson said, and this bill would add life insurance and long-term care insurers to the mix.

Major objections from the industry were aired, then dismissed, as Republican votes carried the measure against Democratic opposition.

Robert Gleeson, a representative from the American Council of Life Insurers, with expertise in underwriting and risk assessment, expressed opposition to this legislation.

“The bill incentivizes fraud and dishonesty,” the insurer decried.

Rep. Chuck Clemons, a Newberry Republican, disputed the idea that undisclosed genetic testing was tantamount to fraud.

Gleeson said the genetic tests would allow insurance applicants to game the system.

The hypothetical fraudsters could “know things” and “withhold information,” securing insurance without disclosing one “important medical disease” or another.

Those with Huntington’s Disease diagnoses apparently are the epicenters of this phenomenon. Gleeson noted that they were five times more likely to apply for long-term care insurance than those without such diagnoses.

Dave Rengachary, also of the American Council of Life Insurers, said passage of the bill would force Florida to “bear the burden” of this insurance pool, given no other state has such legislation.

“We don’t see these genetic applications in a vacuum,” Rengachary said. “This bill would ask that we shift the burden from those who have a genetic test to those who don’t have a genetic test at their disposal.”

“We get one bite at the apple,” Rengachary said, when initially accessing risk.

Rep. Thad Altman, an Indiatlantic Republican, expressed fears of a “genetic elite,” which could be “potentially racist,” if insurers were allowed to use genetic tests in evaluation.

Holland & Knight lobbyist Mark Delegal, representing New York Life Insurance Company, called the sector “financial first responders” as he defended the industry’s practices in assessing risk to avoid “disadvantage.”

“The concern we have,” Delegal said, “is the person trying to purchase life insurance has some information we don’t know or expect.”

This argument was not without advocates.

Democrats on the committee, such as Democratic Ranking Member Shevrin Jones, said this bill would “allow the consumer to hide information during the underwriting process.”

But chair Cyndi Stevenson noted that insurance, and access to it, is a “social contract” issue.

Written By

A.G. Gancarski has been a working journalist for over two decades. Gancarski has been a correspondent for since 2014. In 2018, he was a finalist for an Association of Alternative Newsweeklies "best political column." He can be reached at

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