You Own Your DNA, But Ancestry DNA Still Claim They Own It Too
Clearly “owning” one’s DNA is an impossibility given we leave it all over the place as our hairs fall out and we chuck out our chewing gum. You might get some funny looks if you voiced concerns that someone might run off and sequence your genome and splash it all over the internet. But ownership of the rights to how the information in your DNA is used is a hot topic spanning from clinical and research sample consent right to the seemingly innocuous world of fun tests such as those offered by Ancestry.
How consumer genetic testing companies actually use your DNA is often less than clear and made more opaque through legal jargon and vagaries.
In addition to simplified language, the company combined its policies for Ancestry and AncestryDNA so that users can find them in one place instead of two. The company’s launched a new Privacy center that make key parts of the policies easily visible.
“We’re focused on making the policies that govern our services more transparent and easier for every customer to understand,” an Ancestry spokesperson told Gizmodo. “This was one big step toward that.”
If you want to make an informed decision about how your biological data is going to be used, being able to understand the policies that dictate data use is key.
“This is a good step,” Joel Winston, a consumer protection lawyer, told Gizmodo. “All this information is readable, and it’s all in one place.”
That said, the digestibility of the privacy policies that govern companies like AncestryDNA and 23andMe is only one part of the problem. Ancestry didn’t actually change any of its policies themselves. In its new language, for example, Ancestry is emphatic that you retain ownership over your DNA, repeating in many places statements like this one:
“You own your DNA data and you can ask us to remove your data from our systems at any time.”
But Ancestry still retains rights to your DNA, too, through passages like this:
“Also, by submitting User Provided Content through any of the Services, you grant Ancestry a sublicensable, worldwide, royalty-free license to host, store, copy, publish, distribute, provide access to, create derivative works of, and otherwise use such User Provided Content to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.”
“They still keep trying to say they own your data,” said Winston
DNA-home testing is getting a lot more accessible and affordable for the everyday person, we reported growing concern in the US government as Senator Chuck Schumer said, “Many don’t realise that their sensitive information may end up in the hands of many other third party companies. There is no point in learning about your family tree if your privacy gets chopped down at the same time.”
Striking a balance of the benefits of openness and access and protecting people’s sensitive personal information is crucial to the success of the consumer genomics movement.