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The genetic testing firm 23andme has recently faced significant challenges: a 2023 data breach compromised user information, and in September, the entire board of directors stepped down due to conflicts with CEO Anne Wojcicki. Initially open to acquisition offers, Wojcicki recently reversed her decision this week, stating the company is no longer for sale. Despite this, the situation remains precarious, leaving uncertainty about the fate of customer data if the company fails.
Is 23andme's data being sold?
Currently, there is no confirmation regarding the sale of the company, with or without its data. However, it is plausible that the company might be sold, and the new owner could gain access to the data. A similar scenario occurred in 2020 when MyHeritage acquired Promethease, another DNA analysis firm.
Your data might already be shared with third-party entities. If you enrolled in research studies via 23andme, anonymized information about you, including genetic details, has likely been shared with research organizations and pharmaceutical firms. For instance, 23andme has a data-sharing agreement with GSK (previously known as GlaxoSmithKline), allowing them to utilize the 23andme database for “drug target discovery and other research purposes.”
This isn’t a hypothetical situation but the current reality of their business model. Such licensing deals are a significant revenue stream for 23andme—or at least they aim to be. Their financial performance has been less than stellar recently.
What occurs when you delete your 23andme information?
Removing your 23andme data doesn’t necessarily pull it from ongoing studies, particularly since the data is anonymized, meaning it’s detached from your name and personal details. However, it ensures your data won’t be included in future research initiatives.
23andme outlines their data deletion policies here and here. They state:
If you took part in 23andMe Research, your Personal Information will no longer be utilized in any upcoming research initiatives. If you requested us to store your genetic samples, they will be disposed of. We will keep limited details about you, including records of this deletion request, along with other information mandated by law and outlined in our Privacy Statement.
How to download your data and remove your account
To retain any of your data, log into your account and navigate to your user settings page. (You can also opt out of research studies there.) Click View on the 23andme Data card.
You’ll need to enter your date of birth to verify your identity. In theory, this is where you can download your data, but I couldn’t test this—I have a 23andme account, but I must have provided a fake date of birth years ago. The website simply directs me to contact Customer Care.
This seems like a frustrating hurdle, but it’s the current process. A Reddit user mentioned that Customer Care requested a copy of their ID, which isn’t helpful if you used a fake date of birth. Nonetheless, the company’s documentation states that you can download your data and delete your account if you can bypass that step. Best of luck.
