DNA testing company 23andMe has signed a $300 million deal with a drug giant - here's how to delete your data if that freaks you out
- Popular DNA testing companies like Ancestry and 23andMe can - and frequently do - sell your data to drug makers.
- On Wednesday, pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe - making that connection much more explicit.
- If that new has you wondering about how your own genetic material is being used, here's a guide to deleting your DNA sample and data from 23andMe, Ancestry, and Helix.
Popular spit-in-a-tube genetics testing companies like Ancestry and 23andMe can - and frequently do - sell your data to drug makers. But on Wednesday, one of those partnerships became much more explicit: pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe.
As part of a 4-year deal between the two companies, GlaxoSmithKline will comb 23andMe's genetic data to look for potential new drugs to develop, also referred to as drug targets. It will also use the genetic data to inform how patients are selected for clinical trials.
If that news has you thinking about how your own genetic material is being used for research, know that although the DNA you submit to these services is ostensibly anonymized. However, leaks can happen, and privacy advocates note such incidents could allow your data to find its way elsewhere, perhaps without your knowledge.
Deleting your genetic data from these platforms can be a surprisingly tricky process. Here's how to navigate removing your spit sample and DNA data from the databases maintained by 23andMe, Ancestry, and Helix.
23andMe may keep your spit and data for up to a decade
After registering your spit sample online with 23andMe, you will be asked if you'd like your saliva to be stored or discarded. But you are not asked the same question about your raw genetic data - the DNA extracted from your spit.
Based on the wording of a document called the "Biobanking Consent Document," it's a bit unclear what happens to that raw DNA once you decide to have 23andMe either store or toss your spit.
Here's the statement's exact language:
"By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva, you are consenting to having 23andMe and its contractors access and analyze your stored sample, using the same or more advanced technologies."
That leaves a bit of a grey area as far as what 23andMe has the ability to keep, and how they can use your DNA information. If your spit or DNA sample is stored, the company can hold onto it for between one and 10 years, "unless we notify you otherwise," the Biobanking Consent Document states.
Still, you can request that the company discard your spit. To do so, go to its Customer Care page, navigate to "Accounts and Registration," scroll to the bottom of the bulleted list of options, and select the last bullet titled "Requesting Account Closure."
Once there, you must submit a request to have your spit sample destroyed and/or have your account closed.
Ancestry won't toss your spit unless you call, but you can delete your DNA results
According to the company's latest privacy statement, doing this will result in Ancestry deleting the following within 30 days: "All genetic information, including any derivative genetic information (ethnicity estimates, genetic relative matches, etc.) from our production, development, analytics, and research systems."
However, if you opted into Ancestry's informed "Consent to Research" when you signed up, the company says it cannot wipe your genetic information from any "active or completed research projects." But it will prevent your DNA from being used for new research.
To direct the company to discard your spit sample, you must call Member Services and request that they toss it.
Helix will toss your spit upon request, but can keep data 'indefinitely'
In its most recently updated Privacy Policy, San Francisco-based consumer genetics testing company Helix states that it may "store your DNA indefinitely."
The company also stores your saliva sample. You can request that your spit be destroyed by contacting Helix's Customer Care. There, you'll find a request form that looks similar to the one 23andMe uses.