Florida: “Keep Away from DNA”

Florida has become the first state to mandate DNA privacy. Gov. Ron DeSantis signed a bill into law that prohibits insurance companies from using DNA tests, such as those offered by 23andMe and others, for the underwriting of Long-Term Care Insurance, life insurance, and disability.

The bill was one of 19 pieces of legislation that Gov. Ron DeSantis signed into law to start the month of July.

The law prohibits an insurance company from canceling, limiting, or declining coverage based on genetic information. The bill also bans an insurance company from basing premium rate calculations on genetic information.

However, an insurance company underwriting a Long-Term Care Insurance application may still obtain medical records from an applicant's physicians.  Insurance companies may consider a medical diagnosis included in the medical file, even if a diagnosis was made based on the results of a genetic test.

An applicant is still allowed to volunteer their genetic information from these third-party testing services to an insurance company if they wish to do so in order to obtain coverage.

DNA Testing Popular but Presents Privacy Issues

"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 House Speaker-Designate Chris Sprowls who spearheaded the effort.

Florida State Sen. Kelli Stargel led the effort in the Senate. She thanked Gov. DeSantis for making the legislation law.

"This law will rightfully protect Floridians from violations of privacy, and I am proud of our state for being the first in the nation to protect our citizens from this threat," Stargel said. 

Stargel added that she hopes that this law will become a model for the rest of the country as DNA testing has become popular for many Americans.

Federal Law Weak in DNA Area – States Taking Over

Federal law already prevents health insurance companies from using genetic information in the processing of applications and the setting of premiums. However, this federal law does not apply to Long-Term Care Insurance, life insurance, or disability insurance. 

The head of the agency, which oversees the insurance industry in Florida, Chief Financial Officer Jimmy Patronis, supported the effort to keep DNA information private.

"As DNA testing becomes more popular through companies like 23andMe and AncestryDNA, we must ensure that your genetic code is not used against you," Patronis said in a prepared statement.

DNA Information and Popularity of Long-Term Care Insurance

As more Americans seek Long-Term Care Insurance, their genetic testing became a point of concern. Florida has become the first state to say no.

Long-Term Care Insurance provides tax-free benefits when a person requires help with daily living activities or supervision due to cognitive decline. Many families discover that health insurance, including Medicare and Medicare supplements, pay very little for most costs related to long-term health care. With no advance plan in place, individuals pay for their care from savings and income, or their adult children become caregivers.

DNA information over the past few years has become a point of contention between insurance companies, consumers, and regulators. Insurance companies and their lobbyists objected to these additional rules against the use of DNA data.

Florida legislative staff analysis indicated three states, California, New Jersey, and New York, require insurance companies to obtain consent when requesting genetic testing for life or disability insurance, but not for Long-Term Care Insurance.

Arizona and Massachusetts have limited consumer protections as well.

There are no comprehensive federal genetic privacy laws or regulations in place at the moment. States have adopted a broad spectrum of rules around genetic information. These regulations tend to restrict third parties – like employers or insurance companies - from obtaining genetic information with consent.