In recent history, there has been much controversy about who and what can access consumer DNA sent into genetic testing companies like 23andMe and AncestryDNA or uploaded to genealogy sites like GEDmatch. Law enforcement attempts to use the GEDmatch database forced the platform to add an opt-in and opt-out option for its users, who were not all onboard with law enforcement unknowingly accessing their DNA. 23andMe has been very vocal about their opposition to law enforcement accessing its database, but the courts have not agreed and certain subpoenas do require the company to share information with law enforcement.
But law enforcement is not the only agency interested in consumer DNA. While federal law prohibits health insurers from using a client’s genetic information to set rates or sell a policy, the law doesn’t apply to life, disability and long-term care insurance companies. House Speaker-Designate Chris Sprowls (R-Fla.) sponsored House Bill 1189 to fix that “loophole,” as he called it.
House Bill 1189 was signed into law by Florida Governor Ron DeSantis on July 1, 2020. It prohibits life, disability and long-term care insurance companies from requiring or soliciting genetic information from applicants and forbids DNA testing companies from providing consumer genetic information to insurers without permission.
“Given the continued rise in popularity of DNA testing kits, it was imperative that we take action, in order 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,” Sprowls said in a statement.
With the enacted law, Florida is now the first and only state to protect DNA from all insurers. Similar legislation has been brought forward the past two years, but it stalled in the Senate after passing the House. This time, however, there were only three dissenting votes in the Senate—HB 1189 was adopted by the House 110-0 and the Senate 35-3.
A number of insurers have publicly said they oppose the bill as a “disruption” to the marketplace. Critics of the legislation have argued it is not necessary as information from genetic testing companies can actually be used to reduce insurance premiums. As Sprowls and other representatives noted, it could then also be used to increase premiums for consumers, possibly unfairly.
“Emerging technology and innovations in science mean that we have more access to information about ourselves than ever before, but with these incredible breakthroughs also comes the responsibility on the part of policymakers to ensure consumers’ privacy is protected,” Sprowls said. “I look forward to continuing to work with Governor DeSantis and my colleagues in the House and Senate to ensure Floridians’ privacy is protected as technology and science continue to evolve.”
Photo: Rep. Chris Sprowls, R-Fla., receives a standing ovation on the House floor after being elected by the House Republican Conference as Republican Leader-designate and assuming the title of Speaker-designate on Sept. 17, 2019. Credit: Florida House of Representatives.