How to Delete 23andme Data During a Company Crisis
DNA testing company 23andme has been in trouble lately, with data stolen in a hack in 2023 , and its entire board of directors resigning in September of this year due to disagreements with the CEO. CEO Anne Wojcicki said she was open to third-party takeover bids; she reversed that decision just this week . The company isn’t currently for sale, but that doesn’t look good—and it’s unclear what would happen to customer data if the company went bankrupt.
Is 23andme data for sale?
There is no exact information yet about the company being sold, with or without its data. However, it is reasonable to expect that the company may be sold and the owner will inherit the data. Something similar happened when MyHeritage bought Promethease , another DNA testing company, in 2020.
At this time, your data may already be transferred to other companies. If you signed up to participate in research studies through 23andme , anonymized data about you (including genetic data) was likely shared with research institutions and pharmaceutical companies. For example, 23andme has a licensing agreement with GSK (formerly GlaxoSmithKline) to use the 23andme database to “conduct targeted drug studies and other research.”
This is not a possible future scenario, but rather the current operation of the business. Licensing agreements like these are a big part of how 23andme makes money. Or intends to make money. Or perhaps once made money. They aren’t that good at making money these days.
What happens if you delete 23andme data?
Deleting your 23andme data does not necessarily exclude it from research, especially since the data has been “de-identified,” meaning your name and personal information has been removed. This means that your data will not be used in future research projects.
23andme explains its removal policy here and here . It says:
If you participated in a 23andMe study, your Personal Information will no longer be used in any future research projects. If you have asked us to store your genetic samples, they will be deleted. We will maintain limited information about you, including a record of this deletion request and other information required by law and otherwise described in our Privacy Statement.
Where to download your data and delete your account
If you want to save any of your data, log into your account and visit the User Settings page . (You can also opt out of research there.) Click View on the 23andme data card.
You will be asked to enter your date of birth to verify your identity. In theory you could upload your details here, but I can’t verify it – I have a 23andme account, but I must have given the company a fake date of birth years ago. The website simply tells me to contact customer service .
This sounds like a pretty silly obstacle to me, but here we are. The Redditor reported that customer service asked him to send a copy of his ID, which is useless if you used a fake date of birth. However, the company’s documentation claims that you can download your data and delete your account if you can get past this screen. Good luck.