Deleting Your 23andMe Genetic Data? There is a way, but also a catch

The last few months have been busy for 23andMe, as the company settled a data breach lawsuit and announced a round of layoffs, and many past customers are asking, can I delete the genetic data the company has on me? Although it may not be that easy, there are some things you can do.

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

These concerns have certainly not been alleviated by recent news from the company. Last month, 23andMe announced it would lay off about 40 percent of its workforce, as a result massive data leak and ongoing financial and management struggles in the company, whose share price fell by 70 percent. With all of this hanging over the company like a dark cloud, some people who used 23andMe’s DNA testing services are now looking to bail out, worried about the company’s ability to protect their sensitive genetic information.

About 6.9 million users were affected data breachwith investigations revealing 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 confusing steps you need to take to delete your data from 23andMe.

For more, find out how much 23andMe will pay in the 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 at any time. A 23andMe spokesperson told CNET that once your request is submitted, the data deletion process 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 to delete your profile, a company spokesperson told CNET. The process gives you the option for the company to discard your genetic sample as well, if you originally asked 23andMe to store it. And your information will no longer be usable for any of the company’s research projects.

However, there is more to it than that.

“If a user opts in to 23andMe Research, their personal information will no longer be used in future research projects,” the spokesperson said. “Please note that data cannot be removed from research that has already been conducted.”

Bay Area News Site SFGate found that the genotyping labs that worked on a 23andMe customer’s sample would also retain the customer’s gender, date of birth and genetic information, even after it was “deleted.”

A 23andMe representative said labs are required by law to keep the information for a certain period of time — 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 by 23andMe itself. If the lab were to be the subject of any 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 involved is raw and unprocessed.

Before deleting your 23andMe account, download your data

Before closing your account, please consider first saving all of your 23andMe information, including your raw genotyping data, your DNA relatives, and your ancestry composition. Some files can take up to 30 days to prepare, so plan how you want to approach this.

Downloading your raw DNA file will allow you to upload your genetic data to another service for family or ethnic searches, if you wish.

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 to the bottom and tap Viev in addition to 23andMe Data. In the app, scroll to the bottom of 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 an overview of your 23andMe reports, raw ancestry data, your family tree data, and raw genetic data.

Note: These files come in PDF, TXT, JSON and other formats and you will need the appropriate applications to view the data. For your DNA file, 23andMe will send you an email with the link you use to download the data.

You can also recreate everything in the tables, as outlined hereor take screenshots of everything. Some downloads are done immediately, but some 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. Ready? Here’s how to delete your data:

1. Go to Settings scroll down again to 23andMe Data and tap on Viev. You may be asked to confirm your date of birth to continue.

2. If you’ve already downloaded or otherwise captured all the information you want to keep, scroll to the bottom and tap Permanent deletion of data button.

3. 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 a company store your genetic samples, they will discard them.

For more, find out how 23andMe stacks up against its main competitor, Ancestry.