What Do You Really Agree With by Subscribing to 23andMe Research
23andMe has struck a deal with pharmaceutical giant GlaxoSmithKline, giving the company access to their (your) genetic data for potential drug development. Did they just sell us all? Not really.
This is not the first deal in which 23andMe allows companies to use their (your) data for their research. The company makes up to $ 199 when you buy one of their saliva kits and send your DNA, but their business model has always depended on using the data they collected as a result . The company has previously entered into similar, albeit smaller, deals with Genentech and Pfizer.
But only if you agree to it. When you subscribe to 23andMe, the company asks you if you agree that your data will be used for research. You sign a research consent form that does not clearly explain what could happen to your data. According to the company, the majority of 23andMe customers choose to participate in the program.
According to a 23andMe spokesperson, 23andMe’s research has not yielded any new treatments to date, but scientists are hard at work on data and articles. 23andMe maintains a list of scientific publications that have used their clients’ data. In your account on the site, you can see how many publications your data personally participated in.
“For those who agree, their information will be de-identified and combined into summary statistics, so it will not be possible to identify a single person,” says a spokesman for 23andMe. The company does not technically transfer your data; 23andMe analysts provide “summary statistics” to third parties. It’s relatively safe in theory, but if you’re not sure what you think about it, just click on “Change consent” in your account settings .