Private genetic information should be private. Life insurance companies should not be able to access an individual’s DNA tests and charge higher premiums because of genetic markers, but state law does not ban it. Bills sponsored by Rep. Chris Sprowls, R-Palm Harbor, and Sen. Kelli Stargel, R-Lakeland, would change that, and lawmakers should pass this commonsense, uncontroversial change to protect people’s privacy.
To determine rates or coverage, health insurance companies are already banned under Florida and federal laws from accessing genetic testing results that are not part of an individual’s medical history. But those rules don’t apply to companies providing life, disability or long-term care insurance. Unless the rules change, that means these insurers could potentially buy results from at-home genetic-testing companies such as 23andMe or Ancestry DNA. Those insurers could then decide to charge more because of a genetic marker that says a person might be prone to a disease. In other words, those companies would be using a person’s DNA tests -- the most intimate kind of information -- against them, hedging their bets and charging more even for those who don’t have a condition but might develop it at some point based on their genetic profile.
That’s wrong, and HB 1189 and SB 1564 would correct the situation. The legislation would simply extend the protections built into state law about health insurance to other kinds of insurance. It’s an easy but important fix that would head off a growing problem. The measure would prohibit charging differential rates as well as ban companies from canceling, limiting or denying coverage based on the results of home kits or other DNA tests.
More than 26 million people have already taken a consumer DNA test, and the results can be fun for tracking heritable traits, the geographical spread of ancestors and other interesting information. But as the tests become more sophisticated, the testing companies already warn people before checking their personal results on the markers for certain diseases and conditions. That is proper, because it should be up to the individual to decide whether she wants to know if she carries a gene that might or might not trigger a disease or a condition. Such information is powerful and should be controlled by the individual, not by a company looking to limit its exposure on the backs of people’s privacy.
The era of Big Data and increasingly detailed personal genetic information is still waxing. Laws will have to keep adapting to this evolving reality, but the bias must always favor keeping people’s genetic information within their personal control. And in this case, it’s not a close call. Insurance companies certainly should not be able to profit off such intensely private information by charging higher premiums or denying coverage altogether. The Sprowls-Stargel legislation is a smart step in the right direction.
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