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Health's AncestryDNA won't give you your raw data

Gene ExpressionBy Razib KhanSeptember 17, 2012 6:18 AM


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CeCe Moore points me to an "interesting" fact I had not noticed about's AncestryDNA service (which is not open available to everyone right now):

I re-emphasized to John the importance to the genetic genealogy community that AncestryDNA release our genetic data to us. I mentioned that my colleagues and I were happy to discover that Ken Chahine's statements to the Presidential Commission for the Study of Bioethical Issues in Washington D.C. on August 1st were in line with our belief that our genetic data belongs to us (video and transcript). During the second session, Dr. Chahine stated that "the customer retains ownership of their DNA and data". However, we feel that AncestryDNA's policies do not currently reflect this. John reiterated what I have been told before, which is that they are genuinely considering the best way to deliver this data to us. In response to my persistence, John told me that they are aware that this is important to me, but that they have to take into consideration everyone's feedback, not just mine. As a result, giving us access to our genetic data is not at the top of their list of priorities. He explained that they read lots of feedback and do a significant number of surveys and focus groups in order to determine what is most important to their customers and, by that process, their priorities are dictated....

Most people don't download their raw data from these services,

but it seems to be the ethical thing to do to at least give people the option

. I'm not opposed to paternalism in all cases, but this is ridiculous. What reason does have to not provide raw data downloads when their competitors do? Is this some sort of feature? I had actually had a rather good impression of AncestryDNA before this because of their scientific advisory team, which included some "A-list" scholars whose work I was familiar with. Obviously these scientists aren't privy to all the details of the product, they're consultants, but I wonder if they are aware of this data policy. In any case, I'm peeved enough about this sort of thing that I'll probably make sure to bring this up over & over when they finally get their product out of beta (unless their policy changes). I'm sure has a top-notch marketing and public relations team, so they're service will get lots of good press. But people should be aware of deficiencies where they exist. The bottom line is that's AncestryDNA plans to take your genetic material, analyze it, but refuse to return your raw results. Are you going to pay for that sort of "service"?

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