Florida seeks to bar insurers from accessing DNA test data

TALLAHASSEE, Fla. (AP) — Florida lawmakers advanced a proposal Thursday that would bar life insurers from using information from commercially available genetic tests to deny policies or set premiums based on markers that might be discovered through DNA home kits.

The effort comes amid the booming popularity of heavily marketed genetic testing and the rising concerns from privacy groups and lawmakers.

While federal law already prevents health insurers from refusing medical coverage to Americans with congenital health conditions and accessing a patient's genetic code, the Florida proposal would extend protections to those seeking life insurance based on genetic testing.

On Thursday, a state House committee unanimously endorsed a proposal that is sponsored by a key Republican, Rep. Chris Sprowls, who is in line to become the next Florida House Speaker.

“This bill is about genetic privacy,” Sprowls told his chamber's Health and Human Services Committee.

“What this bill does not do is prohibit access by a life insurer to a medical diagnosis,” Sprowls said. "It does however prohibit them from gaining access to one's genetic code."

Sprowls noted that having a genetic marker for a medical condition does not necessarily mean that an individual will develop that disease.

The proliferation of companies marketing genetic home kits has allowed consumers to gain insights about their ancestry and genetic risks for certain ailments, although the accuracy of over-the-counter tests has come under scrutiny.

By the end of 2018, more than 26 million consumers contributed to the growing DNA databases being amassed by the country's four largest commercial genetic testing companies, according to statistics compiled by MIT Technology Review. By the end of 2020, that number could grow to more than 100 million people.

Ethicists and consumer watchdogs have raised alarm about how the information could be used by consumers themselves but also by genetic testing companies — particularly if the information they collect is shared with law enforcement or sold commercially to third-parties, such as insurers.

The Florida bill would prohibit issuers of life insurance, disability insurance and long-term care insurance from canceling, limiting or denying coverage — and setting different premiums — based on information gathered exclusively from personal genetic information and not through a doctor's diagnosis.

The bill also bars insurers from asking or compelling a consumer for genetic information.