Once you have gotten your DNA tested, is it possible to remove your data from the databases in which it is recorded? If you are among the millions of Americans who have sent DNA to genetic testing labs, such as Ancestry.com and 23andMe.com, you may be wondering what you can do after the fact to keep your data private.
Although you can scrub some of your records, completely deleting your data turns out to be impossible due to laws requiring that the companies maintain the data. And the company that did the testing has probably “already bundled it with other users’ data and stripped it of your name and aggregated it, and either sold it or shared it with other third parties,” says James Hazel, a researcher at Vanderbilt University. This anonymous data is filed away to be used in future tests.
For her job as a reporter Kristen V. Brown sent DNA samples to multiple companies. When she later tried to erase her DNA footprint from all of the places in which it was stored, she found out it was not an easy task. Some companies told her they would delete all of her information, others said they would only remove it from certain places. According to Brown, “Everlywell told me that, while they could remove my results from my account so that I could not access them, the ‘results remain stored on the back end due to regulatory reasons.’ This seemed to spell it out most clearly: When you delete your DNA information, you are mainly hiding your information from yourself.”
ConsumerReports.org has instructions for how to remove the data that can be deleted from the records of three of the largest DNA testing firms: Ancestry, 23andMe and MyHeritage. They also point out that, “consumers should go in with eyes wide open to the information they are unlocking about themselves and their family, the limits of current privacy laws, and the impact of what they might learn on their ability to access life, disability, or long-term-care insurance.”
If you decide to get a DNA test, read the privacy policies carefully and do not automatically click on the default privacy options. Most of all, make sure you know exactly what consent you are giving before you provide access to your DNA.
