[UPDATE] A quick update to this post. As I mentioned, we were working to clarify our Terms and Conditions language around the data rights – or license – you grant us when you take an AncestryDNA test. I’m happy to say that we have just posted the updates.]
Ancestry has released updated Terms and Conditions. These changes apply to all AncestryDNA customers, past and future. The changes that are most relevant to the discussion below can primarily be found in Section 3 The AncestryDNA Service. These changes provide additional clarity around the policies that we already follow in terms of data ownership and sharing. A few highlights of the specific changes are below, but I encourage you to take a look at the whole document yourself.
Like I said yesterday, there are a lot of questions to ask and discussions to be had about genetic testing. We hope these updates help address some of your most pressing concerns.
We’ve recently received a number of questions that stem from an article describing what Ancestry can do with your genetic information that has significant inaccuracies and fundamental errors in it. When I read the article, it became immediately obvious why consumers would have concerns: The article is inflammatory and inaccurate, and contains wild scenarios of the “did you know [insert scary hypothetical]” variety. If you don’t read our terms, and don’t spend a lot of time with our products and services, you might find this article alarming. So, let me try set the record straight by sharing some of the basic principles that guide everything we do at Ancestry.
We believe your DNA data belongs to you and we strive to be true stewards of your data.
If you provide us a sample of your saliva, we’ll analyze it to tell you more about where you come from. The sample, and the resulting data, are yours. You have the ability to download it at any time. You can request that we delete your data and destroy your physical sample at any time and we will do so.
Because genetic information is potentially useful to help cure disease, extend life, and improve science, we ask if you want to take part in research that may be conducted by third parties. If you consent to this through our Informed Consent (approved by an Institutional Review Board), your data is cleansed of any personal identifiers before being aggregated with other’s data, and only then would it be made available to potential research partners. Our research partners are typically from academic settings, but they might include for-profit research companies that are doing things like trying to understand if there are genetic markers related to longevity. Again, if you don’t consent to participate, your genetic information is not included in the research.
We have not sold or provided your genetic data to insurers, employers, or third-party marketers. We protect our users within the law, and require valid legal process such as a warrant before providing any data to law enforcement.
We understand how sensitive your genetic information is, and we have committed to protecting your data, and that’s why we’ve never provided genetic data to insurers or employers. Additionally, with regard to requests from law enforcement, our policy has only been that we will only provide data if compelled to by a valid legal process. We also issue an annual transparency report detailing the volume of law enforcement requests we receive.
The article contains a claim suggesting that we’ve buried, deep in our “Terms of Service,” the ability to reveal highly sensitive health information about you or a relative, which could be used by insurance carriers, law enforcement, or employers. As noted above, this is completely false.
The language referred to is part of the Informed Consent to participate in third-party research and describes some of the unlikely risks of participating. Before you agree to participate, we believe it’s important that you are aware of even unlikely scenarios where aggregated, non-personalized data might somehow be re-identified, which is why we’ve tried to be transparent about such risks and our commitment to avoiding them.
We take a license to your genetic information to allow us to provide you with our products and services, as well as to develop and improve them.
We require you to grant us a license to your data when you take our test. The reason for this is simple: We need that license in order to move your data through our systems, render it around the globe, and to provide you with the results of our analysis work. Personally, I don’t like the legal language on this issue because it can be confusing and seem overly broad, but it’s what’s necessary for us to do the work we do for you. That’s why we also have language throughout the process of activating a test that clarifies and limits what we can and can’t do with your data. We are, of course, actively looking to improve this language to enhance transparency and reduce confusion, and I hope to have some improvements to the transparency of the terms available online soon.
There are a lot of legitimate questions to be asked and discussions to be had about consumer genomics. It’s still a new industry after all. But wildly inaccurate articles don’t do you, the consumer, any favors. Their misleading and fear-inducing content confuses and confounds users, and generally does not help raise the level of dialog about consumer genetics privacy. I don’t expect that this one blog post will clear up every concern, and we’re happy to answer your questions, and hope that everything we have done over the last several decades has helped us earn your trust.
At Ancestry, we are all committed to continuing to earn that trust every single day.