Updated on: August 31, 2020

Taking a DNA test is a great way to learn more about yourself and your heritage. But most people don’t want DNA testing companies to retain ownership of their raw DNA data. The good news is you can take your test, download your results, and then delete them so they are no longer included in the testing company’s database.

Is Downloading and Deleting Your DNA Data Legal?

Yes!

Taking a DNA test does not transfer “ownership” of your DNA to a testing company. You send them your sample and they test your sample, but your DNA information remains your own. You own your DNA and you own your DNA test data.

Once you’ve taken a test and you’ve been notified the results are ready for you to view, you should download the information from the testing site. The way you do this varies from site to site.

What you are downloading is your raw DNA data.

The testing company can continue to use the information compiled from the raw data, as long as it is anonymous and not specific. Any identifying information you gave them, such as your name or address, doesn’t remain with the information they retain. All of your raw data and your identifying information is deleted after you’ve downloaded it.

The raw data provided by DNA testing companies have undergone a general quality review. The information you download is only suitable for informational use and not for medical, diagnostic, or other use.

You can share the information with your doctor if you’d like a medical assessment of the data, but chances are your doctor will encourage you to undergo more thorough testing.

The purpose of downloading your data is so you have it after you’ve deleted it from the testing company’s database.

Why Delete Your DNA information?

The simplest answer is privacy. Many people may not be aware of the requirements companies need to follow when you send them your genetic data, according to Mason Marks, M.D., J.D., a visiting fellow at Yale Law School’s Information Society Project and researcher who studies health law and data privacy.

If a testing company’s terms of service don’t specifically prohibit it, these companies can conduct research on your genetic data, sell it, or share it with third parties. There is a chance your information could be used in ways that are harmful to you, even if it seems as if something is completely safe at the time you do it. It’s better to err on the side of caution.

One of the most significant concerns is that insurance companies or employers could use your information against you. The Genetic Information Nondiscrimination Act (GINA) prohibits this, but that doesn’t mean it can’t happen.

Law enforcement can also use DNA information against you or someone you care about. There have been instances of police officers and criminal prosecutors using genetic data that’s been uploaded to a genetic database to locate suspects or suspects' relatives.

Some companies even distribute or sell your genetic data to third parties. This is why it’s so important to delete your data as soon as possible. If you wait, companies might have already sold the information. Even if you delete the original version of it now, there are still other companies where it’s stored. And once data has been used for research or otherwise shared with third parties, it generally can’t be deleted. Research using your genetic data, for example, may already be in-progress or completed. Not to mention it would be tough to track down all who gained access to it.

If you’ve submitted your DNA to a testing company and you haven’t already, download your information and then delete it from the database.

Joel is a writer with a passion for the science of DNA and the power of its manipulation.

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