Maybe Chris Sprowls is right about DNA privacy


It seems like a decade ago House Speaker Chris Sprowls first sounded the alarm on how genetic testing results could be used to invade your privacy.

In his first Legislative Session as House Speaker, the Palm Harbor Republican pushed a bill that would prevent life insurance companies from using results from consumer genetic testing kits to make actuarial decisions.

It was a bit of a headscratcher at the time. It’s not that it was a bad idea — it was just one of those priority bills that seemed to be crossing a bridge we weren’t at yet.

Federal law already prevents health insurers from using genetic information when they set premiums. Sure, the law doesn’t apply to life insurance policies, but it’s not like 23andMe and Northwestern Mutual are part of some secret cabal.

Still, Sprowls said that was a “massive loophole” and put his full weight behind the proposal.

The bill passed, Gov. Ron DeSantis signed it, and Florida became the first state in the nation to guarantee DNA privacy for life, disability, and long-term care insurance.

There’s a reason insurers were opposed to the bill. They claimed genetic testing results could lead to some customers being charged less.

There’s some truth to that, just like it’s technically true that the little box auto insurers install to measure how often you slam your brakes could land you a discount on car insurance. Emphasis on “could” — because it could also lead to a rate increase.

But insurance is just the tip of the iceberg.

Sure, genetic testing can tell you whether you’re predisposed to diseases such as Parkinson’s, Alzheimer’s or dystonia. The FDA has even approved direct-to-consumer services to screen for those diseases and others.

But what about conditions that aren’t diseases?

A while back I sent my DNA to 23andMe and the results were … interesting. Apparently, I’m afraid of heights.

I knew whether I was afraid of heights long before I swabbed my cheek, so I really didn’t need 23andMe to tell me. And that’s the problem — if genetic testing companies are able to collect data on our fears and phobias, then consumers will need protections from a lot more than life insurance companies.

Imagine if marketers got ahold of that data. You can bet there’d be a banner ad for Canadian diazepam the next time I booked a flight. Imagine if I were denied entry to the Washington Monument or Empire State Building. Imagine if the Cosmo wouldn’t give me a room above the 10th floor.

There’s really no reason for anyone to know about our fears unless we tell them.

It’s starting to look like Sprowls was ahead of his time.

Peter Schorsch

Peter Schorsch is the President of Extensive Enterprises and is the publisher of some of Florida’s most influential new media websites, including Florida Politics and Sunburn, the morning read of what’s hot in Florida politics. Schorsch is also the publisher of INFLUENCE Magazine. For several years, Peter's blog was ranked by the Washington Post as the best state-based blog in Florida. In addition to his publishing efforts, Peter is a political consultant to several of the state’s largest governmental affairs and public relations firms. Peter lives in St. Petersburg with his wife, Michelle, and their daughter, Ella.


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