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This week, the genetic testing company 23andMe filed for bankruptcy, which means the genetic data the company collected on millions of users is now up for sale. If you do not want your data included in any potential sale, it’s a good time to ask the company to delete it.
When the company first announced it was considering a sale, we highlighted many of the potential issues, including selling that data to companies with poor security practices or direct links to law enforcement. With this bankruptcy, the concerns we expressed last year remain the same. It is unclear what will happen with your genetic data if 23andMe finds a buyer, and that uncertainty is a clear indication that you should consider deleting your data. California attorney general Rob Bonta agrees.
Before you delete your account, you may want to download the data for your own uses. If you do so, be sure to store it securely. To download you data:
There are other types of data you can download on this page, though much of it will not be of use to you without special software. But there's no harm in downloading it all.
Finally, you can delete your data and revoke consent for research. While it doesn’t make this clear on the deletion page, this also authorizes the company to destroy your DNA sample, if you hadn't already asked them to do so. You can also make this request more explicit if you want in the Account preferences section page.
If you're still on the page to download your data from the steps above, you can skip to step three. Otherwise:
23andMe should give every user a real choice to say “no” to a data transfer in this bankruptcy and ensure that any buyer makes real privacy commitments. Other consumer genetic genealogy companies should proactively take these steps as well. Our DNA contains our entire genetic makeup. It can reveal where our ancestors came from, who we are related to, our physical characteristics, and whether we are likely to get genetically determined diseases. Even if you don’t add your own DNA to a private database, a relative could make that choice for you by adding their own.
This incident is an example of why this matters, and how certain features that may seem useful in the moment can be weaponized in novel ways. A bankruptcy should not result in our data getting shuffled off to the highest bidder without our input or a guarantee of real protections.
By This week, the genetic testing company 23andMe filed for bankruptcy, which means the genetic data the company collected on millions of users is now up for sale. If you do not want your data included in any potential sale, it’s a good time to ask the company to delete it.
When the company first announced it was considering a sale, we highlighted many of the potential issues, including selling that data to companies with poor security practices or direct links to law enforcement. With this bankruptcy, the concerns we expressed last year remain the same. It is unclear what will happen with your genetic data if 23andMe finds a buyer, and that uncertainty is a clear indication that you should consider deleting your data. California attorney general Rob Bonta agrees.
Before you delete your account, you may want to download the data for your own uses. If you do so, be sure to store it securely. To download you data:
There are other types of data you can download on this page, though much of it will not be of use to you without special software. But there's no harm in downloading it all.
Finally, you can delete your data and revoke consent for research. While it doesn’t make this clear on the deletion page, this also authorizes the company to destroy your DNA sample, if you hadn't already asked them to do so. You can also make this request more explicit if you want in the Account preferences section page.
If you're still on the page to download your data from the steps above, you can skip to step three. Otherwise:
23andMe should give every user a real choice to say “no” to a data transfer in this bankruptcy and ensure that any buyer makes real privacy commitments. Other consumer genetic genealogy companies should proactively take these steps as well. Our DNA contains our entire genetic makeup. It can reveal where our ancestors came from, who we are related to, our physical characteristics, and whether we are likely to get genetically determined diseases. Even if you don’t add your own DNA to a private database, a relative could make that choice for you by adding their own.
This incident is an example of why this matters, and how certain features that may seem useful in the moment can be weaponized in novel ways. A bankruptcy should not result in our data getting shuffled off to the highest bidder without our input or a guarantee of real protections.