Monday, August 3, 2015

Monday Mailbox: AncestryDNA Study Projects

The Ancestry Insider's Monday MailboxDear Ancestry Insider,

I have a concern about this [DNA] database usage by Ancestry in the future and I don't recall seeing you comment on it.

The only reason that I have not submitted by DNA is because I don't know what Ancestry has the right to do with the information or whom they can give it to in future or what their usage will be for generations to come.

I've read Ancestry.com's agreement but it does not specifically address my concern.

Do you know?

Thank you,
ToBe

Dear ToBe,

I put off giving my DNA for a long time, for the same reason. I wish I had the time today to carefully consider your question. But at least I can relate something that happened recently. More on that in just a minute.

Signed,
The Ancestry Insider

Dear Ancestry Insider,

Aren't you going to discuss Ancestry's newly announced sale of all of their DNA to a pharmaceutical company and their "partnership" to develop based on their users' DNA and family histories?  I believe this is a major development that needs coverage and discussion. 

Thank you,
A Gate Pass

Dear readers,

Paragraph 2.vi of the AncestryDNA privacy policy states

vi) To perform research: AncestryDNA will internally analyze Users’ results to make discoveries in the study of genealogy, anthropology, evolution, languages, cultures, medicine, and other topics.

Paragraph 6.i. states

i) Non-Personal Information. Your use of the Service may result in the storage or collection of information that does not personally identify you (“Non-Personal Information”)… Non-Personal Information also includes personal information that has been aggregated in a manner such that the end-product does not personally identify you… Because Non-Personal Information does not personally identify you, we may use Non-Personal Information for any purpose, including sharing that information with the Ancestry Group Companies and with other third parties.

Ancestry recently announced a partnership with Calico, “a Google-funded research and development company whose mission is to harness advanced technologies to increase our understanding of the biology that controls lifespan.” I assume this is the event A Gate Pass is referring to. The announcement says that “together, they will evaluate anonymized data from millions of public family trees and a growing database of over one million genetic samples.” If Ancestry anonymizes the data through aggregation, then Ancestry is complying with its stated privacy policy.

There is another agreement under which AncestryDNA can share your DNA information. AncestryDNA offers users the opportunity to participate in “the research project.” Participation is optional. The research project consent agreement describes rather far reaching uses of your DNA. The project

collects, preserves and analyzes genealogical pedigrees, historical records, surveys, family health data, medical and health records, genetic information, and other information (collectively, "Information") from people all around the world in order to conduct research studies to better understand, among other things, human evolution and migration, population genetics, population health issues, ethnographic diversity and boundaries, genealogy, and the history of our species ("The Project").

Discoveries made as a result of this Project could be used in the study of genealogy, anthropology, population genetics, population health issues, cultures, medicine (for example, to identify drug response, health risks, etc.), and other topics.

The agreement seems to envision multiple projects within The Project.

Each time an individual study is undertaken with a third party researcher or anytime the results of the Project or an individual study are to be published, Information that traditionally permits identification of specific individuals, such as names and birth dates, is removed from the Information.

The studies might result in scientific results which AncestryDNA scientists can publish. The studies may result in commercial products. Results will not be shared with you or your doctor.

The data that Ancestry is providing to Calico may be under this agreement. The way I read it, anonymizing your DNA may be as simple as removing your name and other conventional identifying information.

I’m under some time constraints and did not carefully read these agreements. You may wish to do so before accepting my evaluations.

Read the entire Ancestry/Calico partnership press release on the Ancestry corporate website. Read the AncestryDNA privacy policy and the Consent Agreement on the Ancestry website.

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