Lawsuit Alleges Unauthorized Publication of Personal Genetics Data

An Alaska man reportedly is the lead plaintiff in a proposed class-action lawsuit. An online article claims the lawsuit was placed against “FamilyTee, a Texas-based DNA testing company.” I assume that is FamilyTree DNA, based in Houston. However, the newspaper article in the Ars Technica web site simply says “FamilyTee,” not FamilyTee, DNA. Maybe it is two different companies, although I doubt it. More likely it is sloppy reporting by the author of the article to not properly use the full name of the company.

In any case, the lawsuit claims that “the results of his DNA tests were made publicly available on the Internet, and his sensitive information (including his full name, personal e-mail address, and unique DNA kit number) was also disclosed to third-party ancestry company RootsWeb (a subsidiary of Ancestry.com, a company that allows users to research their lineage).”

The lawsuit goes on to claim “… had he known that Family Tree would disclose his full DNA test results and make them publicly available if he joined a project, he would not have purchased his DNA test from Family Tree, or he would only have done so if offered a substantial discount from the price paid.” I am guessing the plaintiff did not read the full disclosure statement that he signed, as the release gives the company permission to do just that. If he signed the release, thereby giving permission, it seems difficult to believe that he can now claim he was wronged.

You can read more in an article by by Cyrus Farivar in Ars Tecnica at http://arstechnica.com/tech-policy/2014/05/lawsuit-alleges-unauthorized-publication-of-personal-genetics-data/.

3 Comments

Christine Crawford-Oppenheimer May 17, 2014 at 2:34 pm

“…had he known that Family Tree would disclose his full DNA test results and make them publicly available if he joined a project, he would not have purchased his DNA test from Family Tree, or he would only have done so if offered a substantial discount from the price paid.” That comment about a potential discount shoots a hole in his indignation. He wouldn’t allow them to publish his data because he paid $200 or whatever, but had he only paid $50 it would have been okay?

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This is a far bigger issue than the article suggests. At the heart of it is the matter is the question of who owns this information and what can be done with it – with or without the individual’s knowledge.
User agreements are fine, but all they do is outline an understanding between parties – they are *not* law and can not strip one of his or her rights. So who owns the DNA sequencing and genomic/genetic data of an individual person? The individual? Hospitals or the companies performing the tests? The companies which developed the technology?
Who gets to decide what can be done with that information and who can profit off it?
If taken up by interested parties, this could conceivably become a very complicated landmark case as it touches on so many rights issues: privacy, personal property, intellectual property, patents, licensing, etc. Even if this case doesn’t go very far, keep your eyes peeled – many of these will be coming down the pipeline as these tests become even more commonplace and people start realizing just what they are giving away, in addition to their money.

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At our university a student took out a grievance against a lecturer for using her first name in class, although he was required by the university to “call roll” and there were several persons with her surname. She was so stressed by this invasion she could not attend further classes and received a D for her grade; she wanted a B or she would sue the university for harassment. Cost the lecturer $1000 in lawyer costs at the mediation meeting. Only in New Zealand… (I hope).

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