Florida becomes first state to enact DNA privacy law, blocking insurers from genetic data

“Given the continued rise in popularity of DNA testing kits,” Rep. Sprowls said, “it was imperative we take action to protect Floridians’ DNA data from falling into the hands of an insurer who could potentially weaponize that information..."

By John Haughey | The Center Square

Florida became the nation’s first state to enact a DNA privacy law on July 1, prohibiting life, disability and long-term care insurance companies from using genetic tests for coverage purposes.

Gov. Ron DeSantis signed House Bill 1189, sponsored by Rep. Chris Sprowls, R-Palm Harbor. It extends federal prohibitions against health insurance providers accessing results from DNA tests, such as those offered by 23andMe or AncestryDNA, to the three other insurers.

Sprowls, the House speaker-designate, called the legislation a “major victory for Floridians” that “will make Florida the leader in the nation in protecting our residents and our citizens’ genetic information” when it was adopted by the House, 110-0, and the Senate, 35-3.

“Given the continued rise in popularity of DNA testing kits,” Sprowls said Tuesday, “it was imperative we take action to protect Floridians’ DNA data from falling into the hands of an insurer who could potentially weaponize that information against current or prospective policyholders in the form of rate increases or exclusionary policies.”

Federal law prevents health insurers from using genetic information in underwriting policies and in setting premiums, but the prohibition doesn’t apply to life, disability or long-term care coverage.

Insurers argue information gleaned from genetic testing, such as a person’s medical predispositions, could lower insurance premiums across-the-board. Lawmakers, however, said the same rationale could be used to raise rates.

Sprowls, a cancer survivor, discovered the “massive loophole” could be exploited by insurers while on hold during a phone call to a life insurance company in 2017 and the dead air was filled with commercials from DNA-testing companies, he said.

Under HB 1189, insurers are prohibited from using genetic information to price policies and offerings. The bill blocks companies from requiring or soliciting genetic information from applicants and forbids DNA testing companies to provide genetic information to insurers without the customer’s permission.

Individuals still can volunteer genetic information from third-party tests to insurers.

Sen. Kelli Stargel, R-Lakeland, who sponsored the Senate version of Sprowls’ bill, said it will “rightfully protect Floridians from violations of privacy.”

“I am proud of our state for being the first in the nation to protect our citizens from this threat,” Stargel said. “It is my hope that with this legislation signed into law that it will become a model for the rest of the country as DNA testing becomes more ubiquitous and the need for privacy laws becomes even greater.”

In the absence of comprehensive federal genetic privacy regulation, state legislatures have adopted a wide-ranging matrix of laws that typically restrict third parties – such as insurers or employers – from accessing genetic data without consent.

According to the National Conference of State Legislatures (NCSL), Florida is among 16 states that require informed consent for a third party to perform, require or obtain genetic information, among 24 states that require informed consent to disclose genetic information, and among five states that define genetic information as personal property.

Despite the legislation, if DNA test results end up in a person’s health records, insurance providers legally can access it, although the federal 2008 Genetic Nondiscrimination Act (GINA) prohibits them from using that information to deny coverage or increase rates.

In Florida, that federal prohibition also now applies to long-term-care, life and disability insurers.

Genetic privacy likely will remain on lawmakers' agendas in coming years as direct-to-consumer testing gain in popularity.

Among concerns lawmakers may address is revelations several Florida condo associations require prospective residents to submit DNA test results showing they don’t have genetic predispositions to Alzheimer’s, which is legal everywhere but California.