Genetic analysis company 23andMe (ME) announced this week it's declaring bankruptcy and pursuing a sale, leading many customers to pursue deleting their data from the company.
23andMe was founded in 2006 and became something of a frenzy as customers willingly spit into tubes to find out origins of their ancestry. 23andMe wanted to be more than merely a family history lesson, though: The company also sought health insights for customers, using genetic analysis to test for certain predipositions, inherited traits and possible genetic disorders and indicators. It went public via a SPAC in 2021.
Through the years, there have been concerns for user privacy over a variety of issues, ranging from how the company would use your genetic information to if law enforcement would have access to it to the implications of run-of-the-mill data breaches. Now that the company is looking for a buyer, those concerns are coming to a head again as users consider what the next owner might do with their data.
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How to delete your information from 23andMe
California Attorney General Rob Bonta put out a statement last week calling on 23andMe customers to delete their data "due to the trove of sensitive consumer data 23andMe has amassed."
The components stored by 23andMe include the ancestry and health reports as well as the saliva samples themselves. Your information can also be used by 23andMe for research — so that's another risk factor you have to mitigate.
These are the steps to delete your genetic information from 23andMe:
- Log into 23andMe
- Go to "Settings" (on a computer, you find "Settings" by clicking your initials in the top right)
- Scroll all the way down to "23andMe Data" on the "Settings" page and hit "View"
- Enter your date of birth
- You have the option on this page to download your data in various fields. If you want to maintain it personally, go ahead and download the data, following the buttons on the page
- After you've downloaded data to your wishes, scroll all the way down to the "Permanently Delete Data" button and select that
Note that if you requested any downloads of data reports that aren't immediately available (some take time to process), requesting to delete your data will stop those requests. So only delete your data after you have downloaded everything you want to keep.
After you request to delete your data, you will get an email to confirm the request. Click that link to confirm you want to delete your data.
Then, remember, you also have to request to destroy your saliva sample. Here are the steps to destroy your 23andMe saliva sample:
- Go to the "Settings" page on 23andMe's website
- Scroll down to "Preferences" and find "Sample storage"
- If it says "You have selected to store your samples," click "Edit" in the top right of the "Preferences" box
- Select "Permanently discard samples"
- You'll see a green checkmark indicating your preferences have been updated
Lastly, look at if your data is being used for research. If you do not want your data used for research, here's how you address it:
- Go to the "Settings" page on 23andMe's website
- Scroll down to "Research and Product Consents"
- If it indicates you've allowed your data to be used for research, click "Edit" in the top right of this box
- Select "Change consent" as appropriate
- For each option, you'll have to scroll down and check the box indicating "I am this person, I have read this document, and I DON'T GIVE CONSENT."
How else can you keep your 23andMe data safe?
Like any other service you log into and provide information to, 23andMe presents privacy risks that can be helped with basic safety measures.
For example, use a password manager like 1Password or NordPass to select smart passwords, use different passwords for each account, and change your passwords frequently.
With all the changes in the air for 23andMe, you should also be on the lookout for scams. Do not click on any links in texts or emails purporting to be from the company and asking you to provide information or payment. Go directly to the website, app or customer service yourself if you need to manage anything.
23andMe is "unique" in "the scale of how much highly sensitive data" it has, Suzanne Bernstein, counsel at the nonprofit Electronic Privacy Information Center, told NPR, making the protection of user data a bit murky, legally speaking.
Because of that, Bernstein said, she recommends taking the steps to delete your data "and advocating to your state and federal representatives to pass strong consumer privacy laws."
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