New Florida law protects genetic testing info from life, disability, and long-term care insurance policy decisions

On July 1, Florida became the first state to enact a DNA privacy law aimed at certain kinds of insurance.

HB 1189

The law, HB 1189, which received scant attention in the press, protects DNA privacy for a customer’s life, disability, and long-term care insurance.

The 2008 federal Genetic Information Nondiscrimination Act already prohibits discrimination on the basis of genetic information when it comes to things like health insurance and employment. But the Florida law tacks on protections against the other three insurance types.

Passage of the law means that insurance companies cannot use the results of DNA tests, including those that can be done at home, as factors in coverage decisions.

“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,” said Rep. Chris Sprowls (R-Palm Harbor), who lead the bill, in a statement.

Sprowls, a cancer survivor, said he spotted the loophole while on hold with an insurance company—instead of hold music, he was bombarded with advertisements from genetic testing companies encouraging people to buy the tests.

Protection against the use of genetic information

During hearings, insurers said they did not use third party test results, only those already in the applicant’s medical record. The new law limits what genetic intel they can use to results on a medical record and as part of a diagnosis. Individuals, however, can still voluntarily hand over third-party genetic information to insurers.

Besides the federal law and this new one in Florida, many states offer individuals protection against the use of genetic information:

• Employers can’t discriminate based on genetic information in California, Connecticut, Delaware, Louisiana, Maryland, Massachusetts, New Jersey, New York, Oklahoma, and Washington.
• Individuals can refuse to divulge genetic information and opt to not submit to a test in Missouri, Rhode Island, Delaware, Oklahoma, and Kansas.

Despite the 2008 federal law, more national-level protections are needed, some have argued.

“The rise of DNA data has legal experts increasingly concerned that the United States is not effectively protecting consumers from the many privacy risks that now loom before them,” notes Wired. “The patchwork of laws means that in practice genetic anonymity is almost never guaranteed.”

Curious about what laws are in place in your state? The University of Minnesota launched LawSeq, which used a $2 million federal grant to comprehensively map genomics laws state by state and assembled a working group of legal and scientific experts to analyze them.

Future of Florida DNA Privacy 

For Florida, lawmakers’ work on genetic privacy may not be over. As direct-to-consumer testing continues to gain in popularity, new laws may be needed to address the use of genetic testing in housing discrimination cases, for example.