What You’re Really Agreeing To When You Sign Up For 23andMe Research

No, they don’t hand your spit to a room full of scientists.Photo: Guang Niu (Getty)

23andMe has reached a deal with pharma giant GlaxoSmithKline, giving the company access to their (your) genetic data to potentially develop new drugs. Did they just sell us all out? Not exactly.

This isn’t the first deal where 23andMe has allowed companies to use their (your) data for their research. The company makes up to $US199 ($269) when you buy one of their spit kits and send in your DNA, but their business model has always depended on leveraging the data they amass as a result. The company has previously made similar, though smaller, deals with Genentech and Pfizer.

But only if you agree to it. When you sign up for 23andMe, the company asks you if you’re ok with your data to be used for research. You sign a research consent form that explains, in vague terms, what might happen to your data. Most 23andMe customers decide to opt in, the company says.

Research from 23andMe hasn’t yielded any new treatments for diseases to date, according to a 23andMe spokesperson, but scientists are hard at work poring over the data and publishing papers. 23andMe keeps a list of scientific publications that used their customers’ data. From your account on the website, you can see how many publications your data, personally, was involved in.

“For those who do consent, their information will be de-identified and aggregated into summary statistics, so no single individual is identifiable,” says the 23andMe spokesperson. The company doesn’t technically hand over your data; analysts at 23andMe provide “summary statistics” to third parties. This is relatively safe, in theory, but if you’re not sure how you feel about it, just click “Change Consent” under your account settings.


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