Terms and Conditions on Your DNA: How Complicated Can It Get?

This is a long one, that I didn't expect to be long, but I decided the point is how long this is, and the questions it raises about all of those terms and conditions on websites. 

A friend of mine asked me recently about the terms and conditions of the Ancestry.com DNA service. The service, if you're not familiar with it, takes your DNA and breaks it down into ethnic backgrounds for you, based on analysis of genetic markers. Here's a video that talks about it some: 

So if you're using the DNA service, you're handing your DNA over to Ancestry.com, and maybe we should think: what does that mean? After all, who does our DNA belong to, and what can it be used to? The Supreme Court looked at this in the context of patents a few years ago, finding that DNA cannot be patented. So we know that no one can own a patent on your DNA. But that's not really what's at issue in the DNA service site. No one is trying to patent the DNA, but Ancestry.com is still using the DNA in certain ways.

Looking into the terms and conditions initially seemed to me like it would be straightforward. Several hours later...

I started with the actual terms and conditions (makes sense, right?). It has a license provision:  

"By submitting DNA to AncestryDNA, you grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis 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."

That "we deem appropriate" language seems very broad to me. Appropriate for what? There isn't a lot of limitation there, and a lot of trust seems to be placed that your definition of "appropriate" will be the same as Ancestry's (and how likely is that, really?). I looked at some social media terms to compare (Facebook, Tumblr, Twitter), and none of their license grants had "we deem appropriate" language (and, in fact, Tumblr's license in particular was fairly narrow in its grant). Keep in mind, Ancestry has your DNA, not a random tweet about making a cup of tea in the morning. Also a point to think about: the social media is free, and I think we kind of expect that there's a trade-off for that. Ancestry costs money AND also takes a broad license grant in exchange. 

The terms and conditions also go on:

"You hereby release AncestryDNA from any and all claims, liens, demands, actions or suits in connection with the DNA sample, the test or results thereof, including, without limitation, errors, omissions, claims for defamation, invasion of privacy, right of publicity, emotional distress or economic loss. This license continues even if you stop using the Website or the Service."

So they can do whatever they deem appropriate, and you release them from any lawsuits in connection with it. 

Now, adding a complicating layer to all of this, though, is that the terms and conditions are supposed to be read in conjunction with the privacy statement, on a completely different webpage, that does appear to limit what they're doing with the DNA, I think, and also appears to give you the opportunity to cancel the service, although how that affects the license, which says that it survives termination of the service, is unclear to me. And in addition to that, there is another completely different webpage, called the Consent Agreement. I don't know when this comes up in the DNA process, because I didn't want to input my credit card, and before that point I only saw the terms and conditions and privacy statement referenced. But the Consent Agreement has to do with participation in scientific research, which seems cool, except that when you read further down into it, it says stuff like this: 

"If Data are obtained through these methods, 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. There may be state laws and laws outside the United States that prohibit discrimination against you based on genetic data."

Tl;dr: What I just want to say is that's the point. I spent all morning trying to piece together all the different clauses of all these different documents, and I'm still confused, and I'm an actual lawyer (theoretically). And then I wrote a blog entry about it that was also too long! How confused do you think consumers are? And how many of them do you think actually spent the amount of time I did to try to get through all of that?