Imagine, for a moment, that you visit the doctor, and she recommends a quick genetic test to help determine your risk of future cardiac problems. The good news: you don’t have increased risk of heart disease. But here’s the bad news: that same test inadvertently revealed you’re at higher risk of getting Alzheimer’s disease. But here’s the really bad news: under current U.S. law, providers of life insurance or long-term care insurance can refuse you coverage, or boost your premium rates, based on those genetic results, if they get access to them.
This scenario is just one example of why Florida is leading the charge to protect its citizens from potential discrimination based on genetic information. In late January, a bill on this topic passed the Florida House of Representatives with just one dissenting vote. If the state’s Senate approves the bill and Governor Ron DeSantis signs it into law, Florida will become the first state in the nation to expand protections of genetic data.
All Americans are protected to some extent. In 2008, the Genetic Information Nondiscrimination Act became law. GINA, as it’s known, prohibits discrimination based on genetic data among employers and health insurance companies. In other words, you can’t be denied a job or health coverage because of something that turns up in your genetic results, such as a high risk for developing cancer.
But GINA left some glaring loopholes, most notably for disability, life, and long-term care insurance. Right now, customers applying for any of these types of insurance can legally be denied coverage based on genetic information. And with more people taking genetic tests — either medical diagnostic tests or consumer-oriented tests for ancestry, diets, and other uses — the proportion of insurance applicants for whom genetic data exists has never been higher.
The Florida bill, named Genetic Information for Insurance Purposes, would extend those original GINA protections by making it illegal for providers of life insurance or long-term care insurance policies to reject applications, cancel policies, or establish different coverage levels or premium rates based on genetic data. These companies would also be prevented from requiring genetic testing or from using existing test results when considering an insurance policy application.
These kinds of protections are increasingly important. It’s not uncommon for a single gene to harbor variants associated with several different diseases, like heart disease or Alzheimer’s disease. What would happen if anyone who had a routine genetic workup for cardiac health could then be denied long-term care insurance based on ancillary findings about their risk of getting dementia? In the interests of remaining insurable, would we bypass important heart testing that could be used to keep us healthy?
The Florida bill’s resounding approval in the state’s House of Representatives offers hope that governments can finally act quickly to address imminent concerns about the growing pool of genetic data. GINA took more than a decade to get approved by the federal government. Other states, such as California and New York, insist insurers get informed consent from applicants when asking for genetic testing prior to granting coverage. Massachusetts and Arizona prohibit certain uses of genetic information in making insurance decisions, but neither offers the broad protections promised by Florida’s bill. Other states could well follow Florida’s example. “It is inherent in human nature to want to know our background and our history, and yes, to even know what genetic markers we may or may not have,” wrote Florida House Speaker-designate Chris Sprowls, who introduced the bill, in an op-ed in the Tampa Bay Times. “But that information should remain private and should not be weaponized against Floridians.”