DNA privacy bill OK’d in first committee stop

DNA

Sen. Kelli Stargel‘s bill to protect Floridians’ DNA from insurance companies passed its first committee Monday.

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 Lakeland Republican’s proposal (SB 1564) would extend that ban to life, disability and long-term care insurers.

With the proliferation of genetic tests by companies like 23andMe or Ancestry, more people have access to their genome than ever. But Stargel fears people unwittingly allow that information to be shared.

“I think most people do not want their DNA information to be shared,” Stargel told Florida Politics. “I think when they take these tests, they’re making an assumption that it’s for their health care benefit and not that it could be used against them when they’re trying to get any kind of life insurance or anything along those lines.”

The Senate Banking and Insurance Committee passed the proposal 5-1, with Sen. Jeff Brandes casting the lone no vote. His thumbs-down marks the first vote this year in opposition to the legislation as Speaker-designate Chris Sprowls‘ version (HB 1189) coasted through its two committees.

Under the proposal, insurance companies could still use medical diagnoses to plan coverage. And while insurance providers aren’t yet using that information, company officials have said they want to and should have that right.

On Friday, Stargel filed an amendment she thinks satisfies some insurance company concerns. It outlines that insurers can use genetic information if it is found in a customer’s medical records. Additionally, DNA-testing companies could not hand genetic information to insurers without the customer’s consent and insurers could not require prospective customers 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.

Dr. Robert Gleeson, a medical consultant for the American Council of Life Insurers, has opposed the bill in past years. But with Stargel’s amendment, he now says the bill would make the Sunshine State a leader on genetic privacy.

“Genetics is not an all-or-nothing,” he said. “There’s a whole lot of gray and a whole lot of probability, and a whole lot of looking at the test and saying you have a lifetime risk of something, but your per year risk is going to be relatively small.”

And the James Madison Institute, which was opposed to Sprowls’ bill, backs Stargel’s changes, said the group’s vice president of policy, Sal Nuzzo.

Brandes worried customers who check the box for the companies’ terms of service could unwittingly give consent for the companies to distribute their genome. And people with healthy results could voluntarily give insurers medical records showing that result to get better insurance rates.

Stargel said she could address Brandes’ concerns in a future amendment. Her bill next goes to the Senate Judiciary Committee.

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 Senate-wide vote.

Insurance companies opposed the original proposal and argue that customers know more about themselves, potentially cheating insurers out of accurate rates. Charging individuals predisposed to health problems at the average rate raises everyone’s price of coverage, they say.

Last year, Jacksonville Republican Sen. Aaron Bean‘s bill (SB 258) died before going to the Senate floor.