Is 23andMe Deleting Your Genetic Data? There Is A Way, But Also A Catch

The past few months have been tough 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 on me? Although it may not be that easy, there are things you can do.

As we become increasingly aware of how much of our personal information is collected all over the internet, our genetic information is perhaps the most personal data we can share with anyone, let alone companies. But more than 15 million people have done just that with the popular genetic testing and ancestry tracing company 23andMe.

These problems were not relieved by the latest news from the company. Last month, 23andMe announced it would lay off nearly 40 percent of its workforce, after a massive data leak and ongoing financial and management struggles at the company, sending its stock price down 70 percent. With all that hanging over the company like a dark cloud, some people who use 23andMe’s DNA testing services are now looking to bail, worried about the company’s ability to protect their sensitive genetic information.

About 6.9 million users were affected by the data breach, the investigation found that the cyber criminals responsible for the attack specifically targeted the accounts of users of Chinese or Ashkenazi Jewish heritage, who distributed them on the dark web. When you’re ready to close your 23andMe account, read on for the sometimes confusing steps you need to take to remove your data from 23andMe.

To find out more, find out how much 23andMe will pay for the class and learn about the complex relationship between DNA testing companies and privacy.

Can you delete your 23andMe account?

Yes. If you have 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 data deletion process begins “quickly and automatically” and can take up to 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 very complicated. Your 23andMe data will be deleted after you request that your profile be deleted, a company spokesperson told CNET. The process gives you the option to have the company dispose of your genetic sample, too, if you originally asked 23andMe to keep it. And your information will no longer be useful for any of the company’s research projects.

However, there is more to it than that.

“If a customer has opted in to 23andMe Research, their Personal Information will no longer be used for any future research activities,” the spokesperson said. “Please note, data cannot be removed from research that has already been done.”

Bay Area news site SFGate has learned that genotyping laboratories that worked on a 23andMe customer sample will also hold on to the customer’s sex, date of birth and genetic information, even after it has been “deleted.”

A 23andMe representative said that by law, labs are required to keep information for a certain period of time — anywhere from two to three years — after which it will be deleted. The representative also said that this data is stored only by the genotyping lab, not by 23andMe itself. If the lab were to be the subject of any kind of breach, the data it stores is anonymous — it does not include name, address, email, phone number or other contact information — and that the genetic information entered is raw and unprocessed.

Before you delete your 23andMe account, download your data

Before closing your account, consider backing up all of your 23andMe information first, including your raw genotyping data, your DNA relatives and the makeup of your ancestors. Some files can take up to 30 days to process, so make a plan for how you want to deal with this.

Downloading your raw DNA file will allow you to upload your genetic data to another family or ancestry search service, if you want.

Here’s how to download your raw genotyping data and related information:

1. Sign in to your 23andMe account.

2. Go to Settings and in the browser scroll down and tap Look next to 23andMe Data. In the app, scroll down to Settings and tap Access your data under 23andMe data.

3. Here you can choose what information you want to download before you delete your account, including a summary of your 23andMe reports, raw ancestry data, your family tree data and your raw genetic data.

Note: These files come as PDF, TXT, JSON and other formats, and you will need the appropriate applications to view the data. With 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 shown here, or take screenshots of everything. Some downloads come quickly, but others can take up to 30 days, 23andMe said.

How to delete your 23andMe account and data

Once you delete your data from 23andMe, unless you downloaded it first, it’s gone, the company warns. Are you ready? Here’s how to delete your data:

1. Go to Settings Also, scroll down to 23andMe Data, and tap Look. You may be asked to confirm your date of birth to continue.

2. If you have already downloaded or captured all the information you want to save, scroll down and tap Permanently Delete Data button.

3. 23 and I will send you an email asking you to confirm your request. Once you do that, the company will start the deletion process and you will lose access to your account. If the company has stored your genetic samples, they will dispose of them.

For more, find out how 23andMe fares against its biggest competitor, Ancestry.