23andMe Worries

When 23andMe went public in 2021, it was a big deal. The popularity of its genetic tests carried the company to a valuation of US$6 billion. But in recent times, some dramatic changes have occured with its leadership and finances, and now 23andMe is worth very little. This leads to some worries about the future of 23andMe. Specifically, customers are concerned about what will happen to their DNA data.

I am sorry to say that I have very few answers for you. No one knows what their future holds. Will 23andMe rescue themselves from their financial jam? Could they fold? Will they be bought up by another company? If you’ve paid for a 23andMe DNA test, your genetic data is entwined in what comes next.

The CEO has recently said that she will no longer consider selling the company. But I’m not sure how assured we should be. They are not promising anything about our data, other than to keep it secure. And considering their 2023 data breach, that promise has limited value. If you have patronized 23andMe, please understand that HIPAA does not apply to their company or operations.

If you have 23andMe worries, here are a few things for you to consider:

Read the Privacy Statements

23andMe allows everyone to read their privacy terms on their website. They may or may not give you some assurance about your data.

Download Your Data

For now, you may login to 23andMe and go to this link (you.23andme.com/user) to download all of your data and reports. You may have to enter your birthdate and other confirming info, then you’ll be able to save your info to your hard drive or other storage locations. If 23andMe ceases to exist, at least you’ll have those reports in your possession!

Delete Your Account and Its Data

After downloading and saving one’s genetic info, some people feel the need to sever from 23andMe. If you terminate your account with them, it sounds like they will delete almost all data they have on you. You may “permanently delete your data” from 23andMe at the same page as for downloading your data, above. Once at that page, scroll all the way to the bottom and use the big red button.

23andMe Worries

But for those who delete their info from the 23&Me website, please know that 23&Me is playing with the language here, to make it seem like your genetic data will be erased after 30 days. That’s not the whole truth. State and federal laws require that lab records be retained for a longer period. 23&Me may eliminate your data, but the laboratories it worked with may take up to three years to completely delete your genetic records.

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