Personal genetics testing works like this: you spit in a tube, mail it away to a company like 23andMe, and for less than $100, get back a read out on your biological relatives, ancestry (lineage and geographic origins), and — before an FDA crackdown in 2013 — your genetic predispositions for various diseases and traits.
But many people who use genetic testing don’t think about the fact that they’re also giving up their most granular personal information — DNA — to for-profit companies that can then share that data with others.
And that’s exactly what’s happening at 23andMe. Yesterday, the personal genetics company announced a new agreement to give anonymized user data to the pharmaceutical giant Pfizer, according to the Verge.
In a press release, 23andMe said, “Researchers can now fully benefit from the largest dataset of its kind, running queries in minutes across more than 1,000 different diseases, conditions and traits. With this information researchers can identify new associations between genes and diseases and traits more quickly than ever before.”
This comes a week after 23andMe struck a $60 million deal with the biotech company Genentech. The company will give over aggregate user data to Genentech for Parkinson’s research. According to Forbes, 23andMe is working on other similar deals, so its trove of customer data will start to be spread among other biotech and pharma companies for various ends.
23andMe says it ensures privacy, that customers must op-in to these research initiatives, that all research will be vetted by ethics review boards, and that, ultimately, these deals will advance science. As Wired reported, “Sharing resources, the companies say, will help them figure out new ways to treat disease and to design clinical trials.”
They may well do. But it’s also important for users to be aware of what they’re agreeing to when they spit in a tube.
At Vox, for example, we ran a feature on how some 23andMe users ended up unexpectedly finding close family members they didn’t know they had. In one case, a professor’s parents divorced after the site revealed that his father had a secret child. These stories, and the latest news on 23andMe’s third-party deals, should give us pause: As more people log in, services like 23andMe may well become the Google of our personal genetics. Except instead of acting as the gatekeeper for a search query on how to cook a steak, they will be the guardians of our collective DNA.
Gene-testing company 23andMe is sharing its users’ data with Pfizer
