DNA testing companies like 23andMe sell your data. How to delete it


Popular genetic testing companies such as Ancestry and 23andMe can, and often do, sell your data to drug manufacturers. But Wednesday, one of these partnerships became much more explicit, when pharmaceutical giant GlaxoSmithKline announced the acquisition of a $ 300 million stake in 23andMe.

As part of a four-year contract between the two companies, GlaxoSmithKline will analyze 23andMe's genetic data to look for new drugs to develop, also known as pharmaceutical targets. He will also use the genetic data to explain how patients are selected for clinical trials.

If this news makes you think about how your own genetic material is used for research, be aware that even if the DNA you submit to these services is anonymized, leaks may occur and privacy advocates say that such incidents could allow your data to recover elsewhere, perhaps without your knowledge.

"The very structure of this business" – which automatically extracts all customer data and forces users not to participate if they do not want to participate – "suggests that its initiators are not really serious about consent 23andMe's enlightened clients, "Udo Schuklenk, a professor of bioethics at Queen's University, told Business Insider by e-mail.

However, removing your genetic data from these platforms can be a surprisingly complex process. Here's how to navigate by deleting your pin sample and your DNA data from databases managed by 23andMe, Ancestry and Helix.

23andMe can keep your pin and your data up to ten years

23andMe Instagram The basic service provided by most commercial genetic testing relies on the extraction of your DNA from your pin. This is how you get information about your health or ancestry.

After registering your pin sample online with 23andMe, you will be asked if you want your saliva to be stored or discarded. But you are not asked the same question about your raw genetic data, the DNA extracted from your brooch.

According to the wording of what is called the "consent document for the biobank", it is a bit difficult to know what happens to this raw DNA once you decide to store or throw your spit.

Here's what he says (emphasis added):

"By choosing to have the 23andMe store either your saliva sample or the DNA extracted from your saliva, you agree that 23andMe and its subcontractors have access to your stored sample and analyze it, using the same or more advanced technologies. "

This leaves some gray area as to what 23andMe has the ability to keep and how it can use your DNA information. If your pin or DNA sample is stored, the company may keep it for one to ten years, "unless you notify us otherwise," says the document.

You can still ask the company to dispose of your spit or close your account. To find instructions, go to the Customer Support page, go to "Accounts and Registration", scroll down the list of options at the bottom of the list of options under "Creating and accessing an account", then select the last option "Account Request". closing."

Ancestry will not throw your pin unless you call, but you can clear your DNA results

Sarah Kimmorley / Business Insider Australia If you want to delete the results of your DNA test with Ancestry, use the navigation bar at the top of the home page to select "DNA". On the page with your name at the top, scroll to the upper right corner, select "Settings", then go to "Delete test results" in the right column.

The company's latest privacy statement states that this would result in Ancestry being removed by Ancestry within 30 days: "all genetic information, including derived genetic information (ethnicity estimates, relative genetic , etc.) from our production, development, analysis and analysis, research systems. "

However, it states that if you subscribed to Ancestry's "research consent" when you registered, the company can not erase your genetic information from "current or completed research projects". But this will prevent your DNA from being used for further research.

To order the company to dispose of your spit sample, you must call Member Services.

"Protecting customers' privacy is our top priority," a Ancestry spokesperson told Business Insider. "We will not sell or sell DNA data to insurers, employers, or third-party merchants without the express consent of our customers." Customers must explicitly agree to participate in scientific research and may revoke their authorization at any time. "

Helix will launch your spit on demand but may keep the data "indefinitely"

In its latest privacy policy, Helix, a San Francisco-based genetic testing company, says it can "store your DNA indefinitely".

The company also stores your saliva sample. You can request the destruction of your pin by contacting Helix customer service. You will find an application form similar to that of 23andMe.