Turning Down an Opportunity for Free Genetic Testing

I’m glad I didn’t do it, glad I had the choice to decline to do it, and I am still feeling no temptation to do it in the future. I do feel a slight amount of guilt for not contributing to a future “Big Data” project, but so be it. I also am glad I am not contributing to some of the inevitably unethical uses to which eugenics will be put, and that is more than a counterbalance, given that I expect no practical benefit from reading my own test results.

Tyler Cowen had the opportunity to try out 23andMe — the genetic testing company that uses a swab of your saliva to tell you things like inherited traits, genealogy and possible congenital risk factors — and decided not to do it. It’s backed by Google co-founder Sergey Brin, and advertisements have been everywhere (you may have heard about it on a radio program, or from an internet ad). Cowen’s main reasons for turning down the opportunity were “worry cost” (worrying about potential negative information he’d receive), and some privacy concerns (allowing a privately held company to store information about his genetic data).

The FDA has recently asked 23andMe to stop sales of its $99 genetic testing kit because it hasn’t gone through any regulatory clearance. Alberto Gutierrez, the head of the Center for Devices and Radiological Health at the FDA told Bloomberg Businessweek:

“If you scare somebody into believing they’re high risk, they could take actions that hurt their health,” says Gutierrez. Not only is the data on some genetic links inconclusive, he adds, it’s well-chronicled that patients can push their doctors into authorizing unnecessary procedures. “Doctors do a lot of double mastectomies because of fear.”

Some critics argue that the FDA is stepping out of bounds, but Forbes’s Matthew Herper writes that the FDA has shown the startup a willingness to work with it, but hasn’t received any correspondence from the company in six months. Which is fishy!

I’ve considered purchasing the $100 kit before, curious about some factors in my genetic makeup, but given the opportunity, I would probably now take a pass.

Photo: Stew Dean

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