I just saw this:
The backstory is that 23andMe pioneered direct-to-consumer genetic tests starting in 2006. It asked consumers to spit in a tube and send it in, and sent back a detailed summary of their risks for common diseases like macular degeneration. But then in 2013 the U.S. Food & Drug Administration banned the test out of concern that the information wasn’t accurate.
That put a big crimp in 23andMe’s business, but it didn’t end it. As Forbes points out, the real business here is mining this data.
Since it was founded in 2006, 23andMe has collected data from 800,000 customers and it sells its tests for $99 each.
…23andMe’s real business isn’t selling $99 tests, but selling access to data that it has managed to crowdsource as cleverly as Facebook has gathered other personal details. To some observers, that’s pretty worrisome. In 2013, journalist Charles Seife, writing in Scientific American, called 23andMe intentions “terrifying.”
As the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.
Seife’s worry is that the consents customers agree to when they donate their DNA could turn out to be meaningless. Once you are hooked, companies like Google and Facebook often change their privacy policies to expose more and more of your data. Why should DNA be any different?…
According to the Fox Foundation, 23andMe actually gave its testing service away to Parkinson’s patients. That helped it assemble enough of them to create a useful resource it could sell to Genentech to start mining.
What’s the saying? If you’re not being paid, you’re the product. That’s bad enough when they’re high frequency trading thin slices of your mind. When they’re selling someone’s sorrow, pain, and suffering, when they’re selling people’s own DNA, it’s downright disgusting.
If we had a government, there’d be a law against selling people this way.
As things are, I’m betting the high and mighty in DC are fine with it so long as they get their cut of the data. As things are, we’re going to find out one day our own souls got sold to the company store, and the sign for refunds leads to nothing but a phone tree.