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Not happy with the AncestryDNA deal?

The announcement came in just about a week ago, that AncestryDNA had finally begun to do what The Legal Genealogist and many others have long expected it would do: monetize its huge and fast-growing DNA database.

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The press release, entitled “AncestryDNA and Calico to Research the Genetics of Human Lifespan,” was issued July 21st, and announced that:

AncestryDNA, an industry leader in consumer genetics, and Calico, a company focused on longevity research and therapeutics, today announced an effort to investigate human heredity of lifespan. Together, they will evaluate anonymized data from millions of public family trees and a growing database of over one million genetic samples. Financial terms have not been disclosed.

AncestryDNA and Calico will work together to analyze and investigate the role of genetics and its influences in families experiencing unusual longevity using Ancestry’s proprietary databases, tools and algorithms. Calico will then focus its efforts to develop and commercialize any potential therapeutics that emerge from the analysis.

“On the heels of our AncestryHealth launch and our one million genotyped customers milestone for AncestryDNA, we’re excited to announce this collaboration with Calico to research and develop life changing solutions,” said Ken Chahine, Executive Vice President and Head of DNA and Health. “We have laid the groundwork for this effort through the combination of an unmatched family history database, one of the fastest growing genetic databases, and a strong and talented team of computer scientists and professional genealogists.”1

And then came the paragraph that broke the bank for me: “AncestryDNA can provide access to a unique combination of resources that will enable Calico to develop potentially groundbreaking therapeutic solutions. The extensive research period will identify common patterns in longevity and human heredity through pedigree data.”2

Pedigree data. Not genetic data. Family trees. Not just my genes and my SNPs and my quirks. But the genes and SNPs and quirks of those who may be linked to my tree. People whose data I may have entered. People who didn’t ever think that their history, their lives, their predilections towards specific conditions might be disclosed.

Now — to be fair — AncestryDNA has disclosed in very plain very simple English from the outset that anyone who gives consent for AncestryDNA to use data in its research studies is consenting to the gathering and use of every bit of data Ancestry has on us, including “genealogical pedigrees, historical records, surveys, family health data, medical and health records, genetic information, and other information…”3

And in response to the question “What information will be collected?”, the Informed Consent form makes it abundantly clear:

The Project will collect Information (as defined above) consisting of genealogical, genetic, and health information. “Genealogical information” is your pedigree, ethnicity, family history, and other information about you and your family that you provide, gleaned from documents and information on Ancestry.com’s family of websites and other locations, or is otherwise publicly available. “Genetic information” is your genotype that is discovered when AncestryDNA processes your saliva, is otherwise provided by you, or is gathered by us with your consent. Genetic information is in your DNA, and it is what makes you different from everyone else. DNA controls things like the color of your hair or eyes and might make you more likely to get certain diseases or affect whether a drug helps you and/or gives you side effects. “Health information” is health-related information provided by you (if you choose to use the AncestryHealth tools and agree by accepting the Informed Consent) such as responses to our family health questionnaire(s), medical conditions, diseases, personal traits, and other information, medical records and electronic health records you either upload or provide consent for our gathering; documents on Ancestry.com’s family of websites and other locations; and/or information available via publicly available documents.4

So nothing has been hidden in terms of what the consent form covers. Opt in to this research, and you’re giving AncestryDNA about as close to carte blanche to collect intensely personal information about you — and about your family members — as it’s possible to construct legally.

What hasn’t been so clear is that you don’t have to agree to participate in the research project in order to test with AncestryDNA. Here’s what the essential part of the web page looks like today to activate an AncestryDNA test kit:

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So you can see that the checkbox for opting-in to the research project appears sandwiched in between a box most people want to check — to get their ethnicity percentages — and a box all people have to check — to accept the terms and conditions.

Nowhere on that page does it say in plain terms that you don’t have to check that box. For the longest time that page didn’t even distinguish with the asterisk between required agreements and optional agreements. And even now, nowhere on that page does it say what information you’re consenting to disclose if you do check that box.

Yes, we all should know better than to simply click a checkbox. Yes, AncestryDNA has a hot link to click through and actually read the Informed Consent document and the terms and conditions. Yes, we should read every word.

And the simple reality is, most of us don’t bother reading all this stuff. Most of us don’t bother reading any of it. We just click click click.

So when AncestryDNA says that many hundreds of thousands of its more than 1 million test takers have agreed to participate in the research study, I don’t believe for one minute that more than a tiny fraction knew that (a) they didn’t have to agree and (b) if they did agree, they were agreeing to disclose every last jot and tittle of their family history.

For those who did, terrific! If you’re on the cutting edge of science and want to contribute to all studies everywhere and you know your family is good with this, checking that box was the right thing to do.

But for those of us who are discomfited by this commercialization of data that doesn’t belong exclusively to us… what do we do? What can we do?

We can opt out.

The AncestryDNA informed consent agreement isn’t a sign-it-once-and-you’re-stuck-forever deal. If you checked that checkbox and are uncomfortable with the idea that your family tree data could be disclosed to a commercial company, even with identifying names and the like removed, you can change your mind:

You can decide not to be in this Project and, at any time, you may choose to withdraw some or all of the Information you provided by sending a request to consent@ancestryDNA.com.5

That won’t retrieve any data that’s already been used for research before you opt out, and “any study results or findings that have been published prior to this date cannot be reversed, undone, or withdrawn.”6

Should you opt out? That’s up to you. You’re the only one who can decide how you feel about the idea of a commercial company having access to your family tree data, even anonymized data.

I can only tell you that, the more I thought about it, the more I thought about the launch of AncestryHealth (collecting family health data linked to family trees), the more I thought about the kind of information that could be collected about other members of my family who never personally consented — who may not even know there’s such a thing as Ancestry.com — I felt that I’d been pushed beyond my comfort zone.

I have opted out.


SOURCES

  1. Ancestry, “AncestryDNA and Calico to Research the Genetics of Human Lifespan,” 21 July 2015, Press Releases, Ancestry.com (http://corporate.ancestry.com/press/ : accessed 25 July 2015).
  2. Ibid.
  3. AncestryDNA Informed Consent, AncestryDNA (http://dna.ancestry.com/ : accessed 25 July 2015).
  4. Ibid., paragraph 2, “What information will be collected?”
  5. Ibid., paragraph 12, “How do you withdraw from this Project?”
  6. Ibid.
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