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I'm sure you've heard of Ancestry.com, the data mining site masquerading as a genealogy site, running tons of folksy ads on talk radio and cable news. For instance, the kind where someone who has always thought they were German learns they are actually Scottish. The very concept says a lot about our narcissism as much as it does our obsession with the past. On the one hand if you can claim you are a descendent of someone famous, then somehow it rubs off on you. On the other, more legitimate side, it gives you a sense of your place in history and your lineage.
Ancestry's July 4th spot with actual descendants of the signers of the Declaration of Independence proves illustrates both sides of the coin. On one hand, I'd hate to run into any of these people at a party as you just know they'd bust out that factoid pretty quickly. And while it gives them a smug sense of pride, it is cool bragging rights that don't mean much. On the other hand, perhaps it gives everyone a sense of how far we've come as a society.
However, a piece in Think Progress perfectly illustrates the dark side of how far we've come since embracing the internet. Ancestry, not content with mining all the data you willingly give it in the vainglorious hopes of being able to prove your relation to someone famous, is also collecting your DNA. AncestryDNA promises an analysis of your genetic ethnicity, for ninety-nine bucks and a swab of spit.
As Think Progress points out. "Ancestry.com...gets free ownership of your genetic information forever. Technically, Ancestry.com will own your DNA even after you’re dead."
It's in their terms of service. You know--that thing you never read.
By submitting User Provided Content to AncestryDNA, you grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute, communicate, and display your submission for the purposes of providing Ancestry's products and services, conducting Ancestry’s research and product development, enhancing Ancestry’s user experience, and making and offering personalized products and services. In other words: we use your Genetic Information to provide products and services to you and improve our products and services for all our users. In addition, you understand that by providing any DNA to us, you acquire no rights in any research or commercial products that may be developed by AncestryDNA using your Genetic Information.
Note the keywords here: "perpetual," and "royalty-free." That's right, once you swab your cheek and send them your saliva, they can use your DNA in perpetuity for however they wish without compensating you or your heirs. And that last sentence means they can monetize your DNA.
"So what," you say? There's more.
In their "informed consent" section, after a litany of potential risks, there is a somewhat ominous bullet point that reads "There may be additional risks to participation that are currently unforeseeable." Such as:
...it is possible that information about you or a genetic relative could be revealed, such as that you or a relative are carriers of a particular disease. That information could be used by insurers to deny you insurance coverage, by law enforcement agencies to identify you or your relatives, and in some places, the data could be used by employers to deny employment.
In the United States, a federal law called the Genetic Information Non-Discrimination Act (GINA) generally makes it illegal for health insurance companies, group health plans, and most employers to seek your genetic information without your consent, and to discriminate against you based on your genetic information. GINA does not protect you from discrimination with regard to life insurance, disability insurance, long-term care insurance, or military service.
By the way, this has already happened. And should it happen to you, you are out of luck because you agreed to the Terms of Service which waives liability of Ancestry DNA.
You agree to defend, indemnify and hold harmless AncestryDNA, its affiliates, officers, directors, employees and agents from and against any and all claims, damages, obligations, losses, liabilities, costs or expenses (including but not limited to attorney's fees) arising from: (i) your use of and access to the Website and Service; (ii) your violation of any term of this Agreement; (iii) your violation of any third-party right, including without limitation any copyright, property, or privacy right; or (iv) any claim that your User Provided Content caused damage to a third party. This defense and indemnification obligation will survive this Agreement and your use of the Website and Service.
After the Think Progress article, there was a post from Ancestry.com called Setting the Record Straight: Ancestry and your DNA, which sought to clarify some of the Terms of Service.
First, we very clearly state that AncestryDNA does not “claim ownership rights in the DNA that is submitted for testing.” You own your DNA; this sentence helps make it clear that nothing we do takes, or has ever taken, that ownership from you. Second, we’re clear that because you are owner of your DNA, we need you to grant us a license to your data so that we can provide our products and services to you and our other users, as well as develop new products and services. You can revoke this right at any time by requesting we delete your data or your account.
Third, we explicitly state that we will not share your genetic data with employers, insurance providers or third party marketers without first getting your consent. We already follow this procedure, but this language makes our commitment to you explicit.
You can revoke the right by requesting we delete your data or your account. And I wonder how long it will take for them to comply with that wish?
Despite their setting the record straight post, it is important to recognize that everything in the Terms of Service the Think Progress piece mentioned is still part of AncestryDNA's Terms of Service. Moreover, attempts to get clarifications have gone unanswered. Considering we're approaching August, and the original piece from Think Progress was written in May, it's unlikely any clarifications will be forthcoming any time soon.