In case you weren’t aware, companies like Ancestry and 23andMe are legally allowed, and often do, sell your data to drugmakers. However, this summer one of those partnerships became much more explicit; in July Big Pharma giant GlaxoSmithKline acquired a $300 million stake in 23andMe.
(Please make sure to watch the video below.)
(Please make sure to watch the video above.)
If that wake-up call has you rethinking about giving these companies access to your genetic material, you still have options, although it might be a long process: (And let’s be clear, while there are supposed to be protections in place to make sure that your info isn’t stolen, “…leaks can happen, and privacy advocates note that such incidents could allow your data to find its way elsewhere, perhaps without your knowledge.”1)
- When you register your spit sample online with 23andMe you are asked if you’d like your saliva to be stored or discarded (something they don’t ask about your raw genetic data) and based on the wording of the “biobanking consent document,” it’s not totally clear what happens to that raw DNA. However, you can submit a request that the company discard your spit or close your account; go to the customer-care page, navigate to “accounts and registration,” scroll to the bottom of the bulleted list of options under “account creation and access,” and select the last one, “requesting account closure.”2
- To delete your DNA test results with Ancestry, use the navigation bar at the top of the homepage to select “DNA.” On the page with your name at the top, scroll to the upper right corner, select “settings,” then go to “delete test results” on the column on the right side. According to the company, within 30 days they will delete: “all genetic information, including any derivative genetic information (ethnicity estimates, genetic relative matches, etc.) from our production, development, analytics, and research systems.” Keep in mind: if you originally opted into the company’s “informed consent to research” Ancestry cannot wipe your genetic information from any “active or completed research projects” but it will prevent your DNA from being used for new research. Call member services to direct them to discard your spit sample.3
- Upon request, Helix will toss your spit sample but can keep data ‘indefinitely’. Unless you request it, they will store your saliva sample. So contact their customer-care division and fill out a request form.4
Have you used any of these company’s services? How do you feel about what might potentially be done with your DNA? Will you be calling to request they delete your info?