The last few months have been bumpy for 23andMe, with the company settling a lawsuit related to a data breach and announcing a round of layoffs, and many past customers are wondering, Can I delete the genetic data the company has from me? Though it might not be that easy, there are some things you can do.
As we grow increasingly aware of how much of our personal information is being gathered across the internet, our genetic information is perhaps the most personal data we could possibly share with anyone, let alone with companies. But over 15 million people did just that with the popular genetic-testing and ancestry-tracking company 23andMe.
These concerns certainly haven’t been soothed by recent news out of the company. Last month, 23andMe announced that it would be laying off around 40 percent of its workforce, in the wake of a major data leak and ongoing financial and management struggles at the company, which has seen its stock price plummet by 70 percent. With all that hovering over the company like a dark cloud, some people who used 23andMe’s DNA testing services are now looking to bail, concerned about the company’s ability to protect their sensitive genetic information.
Around 6.9 million users were affected by the data breach, with investigations finding that the hackers responsible for the attack specifically targeted the accounts of users with Chinese or Ashkenazi Jewish heritage, which they spread on the dark web. If you’re ready to close your 23andMe account, read on for the at-times confusing steps you need to take to delete your data from 23andMe.
For more, find out how much 23andMe will pay out in a class-action settlement and read about the complex relationship between DNA testing companies and privacy.
Can you delete your 23andMe account?
Yes. If you used 23andMe for DNA testing, you have the option to delete your account and personal information whenever you choose. A 23andMe spokesperson told CNET that once your request is submitted, the process of deleting data begins “immediately and automatically” and can take about 30 days to complete. But not all your data is deleted in 30 days.
What data is deleted after you close your 23andMe account?
The answer to this is more complicated. Your 23andMe data will be deleted after you request the deletion of your profile, a company spokesperson told CNET. The process gives you the option to have the company discard your genetic sample, too, if you initially requested that 23andMe store it. And your information will no longer be usable for any of the company’s research projects.
However, there’s more to it than that.
“If a customer opted in to 23andMe Research, their Personal Information will no longer be used in any future research projects,” the spokesperson said. “Please note, data cannot be removed from research that’s already been conducted.”
Bay Area news site SFGate found that genotyping laboratories that worked on a 23andMe customer’s sample will also hold on to the customer’s sex, date of birth and genetic information, even after they’re “deleted.”
A 23andMe representative said that by law, labs are required to retain the information for a set period of time — from two to three years — after which it will be deleted. The representative also said that this data is retained only by the genotyping lab, not 23andMe itself. If the lab were to be the subject of any sort of breach, the data it retains is anonymous — it does not include a name, address, email, phone number or other contact information — and that the genetic information included is raw and unprocessed.
Before you delete your 23andMe account, download your data
Before closing your account, consider saving all your 23andMe information first, including your raw genotyping data, your DNA relatives and your ancestry composition. Some of the files can take up to 30 days to prepare, so make a plan for how you want to approach this.
Downloading your raw DNA file will let you upload your genetic data to another service for family or ethnicity searches, if you want.
Here’s how to download your raw genotyping data and related information:
Log into your 23andMe account.
Head to Settings and in a browser scroll to the bottom and tap View next to 23andMe Data. In the app, scroll to the bottom of Settings and tap Access your data under 23andMe data.
Here you can pick which information you want to download before you delete your account, including an overview of your 23andMe reports, your ancestry composition raw data, your family tree data and your raw genetic data.
Note: These files come through as PDF, TXT, JSON and other formats, and you’ll need the appropriate apps to view the data. For your DNA file, 23andMe will send you an email with a link you use to download the data.
You can also recreate everything in spreadsheets, as mapped out here, or take screenshots of everything. Some of the downloads come through right away, but some can take 30 days, 23andMe said.
How to delete your 23andMe account and data
Once you delete your data from 23andMe, unless you’ve downloaded it first, it’s gone, the company warns. Ready? Here’s how to delete your data:
Head to Settings again, scroll down to 23andMe Data, and tap View. You may be asked to verify your birthdate to continue.
If you’ve already downloaded or otherwise captured all the information you want to keep, scroll to the bottom and tap the Permanently Delete Data button.
23andMe will send you an email asking you to confirm your request. Once you do, the company will begin the deletion process and you will lose access to your account. If you had the company store your genetic samples, it will discard them.
For more, find out how 23andMe fares against its main competitor, Ancestry.