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.
About the Author
An LTC News author focusing on long-term care and aging.
Contributor since August 21st, 2017
Despite the new Florida law, health information will be used as part of the underwriting process when you apply for Long-Term Care Insurance. While DNA information, at least in Florida, will not be used against you, your poor health could limit or prevent you from obtaining coverage.
Waiting until you are older to obtain coverage increases the chance that your application will be declined or rated due to existing health issues. Experts caution that the longer you delay purchasing, the higher chance that a health concern will prevent you from getting the protection in the first place.
Premiums Vary Over 100%
Long-Term Care Insurance is easy and affordable to obtain if you start planning when you still enjoy good health. Experts recommend securing coverage in your 40s or 50s. Generally, you will still enjoy good health and may qualify for good health discounts many companies offer.
Premiums are calculated based on the amount of coverage you wish to have, your age, health, and other factors, including family history. The premiums can vary over 100% between insurance companies for the same coverage.
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Start your research by using the LTC NEWS Cost of Care Calculator. You will find the current and future cost of care where you live and other vital information. Click here to access the calculator.
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