GENEALOGY: A warning to Ancestry customers who consent to use DNA services – Terre Haute Tribune Star

A couple of years ago, Ancestry went into a partnership with a biotech company called Calico, owned by Google. The premise of this partnership was that Ancestry would make its customers DNA results available to this other company to use for their research purposes. Its a for-profit venture on both sides. Ancestry sells its customers DNA data to Calico and Calico makes money off the research it does. Customers pay Ancestry to conduct the DNA test, but Ancestry and its partners stand to make billions.

This May, an attorney named Joel Winston, specialist in consumer protection, former deputy attorney general for New Jersey, and formerly in the Department of Justice, posted a warning to Ancestry customers when they consent to use the DNA services. The following is a summary of his article which can be found in its entirety on https://thinkprogress.org/ancestry-com-takes-dna-ownership-rights-from-customers-and-their-relatives-dbafeed02b9en.

To use the AncestryDNA service, customers must consent to the Ancestry Privacy Policy and Terms of Service. These are binding legal contracts between the customer and Ancestry. The most egregious of these terms gives Ancestry a free license to exploit your DNA for the rest of time...There are three significant provisions...to consider on behalf of yourself and your genetic relatives: (1) the perpetual, royalty-free, world-wide license to use your DNA; (2) the warning that DNA information may be used against you or a genetic relative; (3) your waiver of legal rights, writes attorney Winston.

(1) Basically, Ancestry gets to use or distribute your DNA for any research or commercial purpose it decides and doesnt have to pay you, or your heirs... Ancestry takes this royalty-free license in perpetuity (for all time) and can distribute the results of your DNA tests anywhere in the world and with any technology that exists, or will ever be invented. With this single contractual provision, customers are granting Ancestry the broadest possible rights to own and exploit their genetic information. Although the customer can withdraw consent, full withdrawal isnt easy, may not be possible and requires more steps than just a click of a mouse.

(2) Ancestry warns customers that it is possible that information about you or a genetic relative could be revealed [and] that information could be used by insurers to deny you insurance coverage, by law enforcement agencies to identify you or your relatives, and...by employers to deny employment. (Ancestry has already turned DNA over to law enforcement in several cases).

(3) Even the genetic relatives of a customer, who have never taken the Ancestry DNA test or consented to it, are in effect signing over their rights and privacy to Ancestry when their relative takes the test: You or a genetic relative agree to hold the company harmless for any damages that AncestryDNA may cause unintentionally or purposefully. Customers give up the right to sue or participate in a class action.

Attorney Winston cautions the consumer to be aware of these issues and to fully read the privacy policy and terms of service beforehand. Since his article appeared, Ancestry has made some slight changes to the wording of their consents, but these issues still exist.

Another genetic company, 23andMe, has long been in the biomedical field and its customers also consent to other uses of their DNA. Recently, it patented a designer-baby technology, in which desired characteristics could be taken from several egg and sperm donors based on DNA profiles, and used to create a customized baby. See http://www.nature.com/gim/journal/v15/n12/full/gim2013164a.html. 23andMe customers may or may not think this idea is moral or ethical. But I doubt this is what they thought they were signing up for when they ordered the test. We dont know what the future of DNA research holds for humanity, but now Google has access to it.

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GENEALOGY: A warning to Ancestry customers who consent to use DNA services - Terre Haute Tribune Star