You Can Donate Your Genome For Medical Research, But Not Anonymously

An anonymous reader writes "Dozens of volunteers who anonymously donated their genomic data to a public database for medical research have been identified by a team led by Yaniv Erlich, a former computer security researcher turned geneticist. Erlich's team matched Y chromosomal markers in genomes compiled by the 1000 Genomes Project with non-anonymous genomic databases, for example some assembled from contributions by family tree enthusiasts (abstract). After finding a match on a presumed relative of the study participant, the researchers pieced together the relative's family tree through search engines and the like, until they were able to identify the participant based on gender, age, place of birth, and other supposedly 'non-identifying' information associated with the genome. The names of the identified participants have not been released."

Re:Another law

[Archangel Michael]

It isn't the fault of anyone. Identification is exactly that, itendification. To identify someone or something, we have to have identifiable information. That information HAS TO BE FREE in order for identification to work. Given enough information, it will always be easy to identify specific individuals with relative certanty. That is kind of the point of identification, isn't it?

There is no PRIVACY violation here. Also, privacy is an illusion. If you want privacy, go live off the grid in some cave all by yourself.

If you want to create a "crime" for this, how about creating a general statute that basically says, "any inappropriate use of identification of individuals, without their express concent, is illegal" and then define what constitutes "Inappropriate" separately in such a way that it creates clear guidelines that spans all forms of technology used to identify people.

Re:Really?

[interkin3tic]

I skimmed at least one of TFAs. Didn't see anything about any participant being mad about it. It did say something along the lines of "We told these people they'd be anonymous." So there is an important issue of informed consent here: the researchers were wrong when they were getting permission. Hopefully no lawyers hear about this.

It also points out that as a consequence, the data can't be distributed freely, since it could be traced back and used to discriminate against people whose only crime was trying to help science and having faulty genes.

So, no, this isn't a simple matter of "people getting mad," this is serious consequences.