DNA privacy bill passes the House, but questions remain in the Senate

The House gave nearly unanimous approval Wednesday to a bill that would protect Floridians’ genetic privacy from insurance companies.

Speaker-Designate Chris Sprowls‘ bill (HB 1189) sailed through its two House committees. Rep. Mike Hill cast the lone vote opposing the measure in the 117-1 vote.

State and federal law already prevent health insurance companies from considering a person’s genetic information when deciding if and at what price to cover that consumer. But the Palm Harbor Republican’s proposal would extend that ban to life, disability and long-term care insurers.

Insurance companies could still use medical diagnoses to plan their coverage. Insurance providers aren’t using genetic information from companies like 23andMe and Ancestry,  and they have not expressed a desire to use information collected through consumer-grade tests. They are strictly concerned with DNA information that is part of the medical record.

The ball is now in the Senate’s court, but the Legislature will need to reconcile substantive changes Sen. Kelli Stargel made in her version (SB 1564) during a Tuesday Senate committee.

On Friday, Stargel, a Lakeland Republican, filed an amendment satisfying the concerns of some insurers. It outlines that insurers can use genetic information if it is found in a customer’s medical records. Additionally, DNA-testing companies could not give genetic information to insurers without the customer’s consent, and insurers could not require prospective customers to take a genetic test.

“I think we’re doing the best we can to try and thread the needle of allowing an insurance company to have the information they need and also allowing an individual to have privacy for information that is possibly on a guess — of something that may not actually be a diagnosis,” Stargel told the committee.

But Sprowls, whose bill completely shuts the door on genetic test results, made no such amendment Wednesday. And he withheld further comment on the Senate proposal, saying it was too early in the process to weigh in.

“The Senate is working through the process in their chamber and they will come to their own conclusions about what values they think matter the most,” Sprowls said in a statement to the News Service. “It is premature to comment on a bill until the Senate passes a final version. At that point, we will talk through our differences (if any) and try to arrive at a final product that provides a just result for the people of Florida.”

Curt Leonard, regional vice president of the American Council of Life Insurers (ACLI), said the lobbying group is still concerned the measure could disrupt the life insurance market and raise consumer prices.

“We will continue working with the sponsors to align the bill’s intent with its language prohibiting the use of DNA data even if it is generated by a medical doctor,” he said.

Stargel’s version of the bill covers the ground between Sprowls and ACLI.

“We support the stated purpose of protecting consumers from the improper use of their private genetic information,” Leonard said in a statement. “We also support the stated purpose of continuing to allow life insurance companies to consider this information if it’s part of an applicant’s medical record.

But Sprowls dismissed the industry’s argument that the ban on using the information could be disruptive, as the companies don’t use the information today in pricing plans.

Sen. Jeff Brandes voted against Stargel’s bill in part because people with healthy genetic results could voluntarily submit those to try to earn better insurance rates.

And last week, Sprowls said his concerns include more than the proliferation of genetic data from testing companies.

“That doesn’t include the thousands of others who’ve been a part of groundbreaking clinical trials, who’ve had a clinical setting do a DNA test,” he told reporters. “So many millions of Americans are at risk for this.”

Last Session, the House version of the bill (HB 879), filed by Pace Republican Rep. Jayer Williamson, passed that chamber 88-26 but never received a full Senate vote.

The Senate Banking and Insurance Committee passed Stargel’s proposal 5-1 with Brandes casting the lone no vote. Stargel said she could address his concerns in a future amendment. Her bill next goes to the Senate Judiciary Committee.

Sprowls, a cancer survivor, said he discovered the issue in December 2017 when he was applying for life insurance. While he was on hold on the telephone waiting for assistance, he said he was struck by commercials from companies such as 23andMe and AncestryDNA encouraging people to buy genetic tests.

Information from the News Service of Florida was used in this report.