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

[Amorymeltzer]

Preventing the release of your own information? Identification by genotype is a very real privacy issue, but what happened here is NOT the fault of researchers. People seeking familial ancestry information, posted some genotype information online PUBLICLY, in the hopes of finding a relative (in this case, fathers, who can be traced by the Y chromosome). Since last names are roughly patrilineal, a simple genotype match cross-referenced with last names and location made it trivial. Are people to be prevented from releasing their own information? It's the same thing as Facebook - until individuals realize that their private information can be used by anyone for anything once public, this will continue to occur.

Re:MY SEED IS PLENTY !!

[Anonymous Coward]

Those of us who see these privacy problems in advance are called "tinfoil hatters" and the like, but only by the rabble who act like everything always goes according to plan.

The defender must successfully deal with every potential threat. The attacker only has to find the one thing the defender missed. Thus, security favors the attacker. In this case, the investigator trying to find out who this "anonymized" info belongs to is the attacker.

Is that really so hard to understand? Do you see how un-justifiable all the name-calling like "paranoid" "tinfoil hatter" etc really is? Some people have to have it happen to themselves personally before they finally stop bleating like sheep and believing at face value every promise that is made to them.

With governments and corporations in particular, it makes no sense the way people want to believe them. Why would you put so much faith into something that has lied to you so many times before? When this is not hard to prove? You see, it makes no sense. Are you that impressed by organizations or something?

Research to scare people about DNA privacy.

[A. Jamie Cuticchia]

As a fairly well-known geneticist, a study like this either, through direct dissemination or twisted discussion, is exactly what continues to worry people about giving DNA samples. I am also a lawyer and concerned about this in terms of any privacy rules which may have been violated. I am not against experiments of this type, so long as every subject knows exactly what they are getting self into. General consent forms for studies are expected to be written, in most cases, at a 5-year-old reading level - I can't imaging discussing this at that level.

Re:Another law

[Charliemopps]

The problem isn't what people, or business's do with this information. That's just annoying... The problem is what the government will do with it, and they will, of course, exempt themselves from any such laws.