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."

Comments

Really?

[Antipater]

You donated the sequence of information that is the inherent root of your entire unique identity...and you're mad that someone used it to discover your identity?

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.

Insurance - Denied

[Maximum Prophet]

The Genetic Information Nondiscrimination Act makes illegal for health insurers to discriminate based on genetic testing but life insurance, disability insurance or long-term-care insurance companies can.
http://www.kaiserhealthnews.org/Daily-Reports/2013/January/18/genetic-testing.aspx
Those companies might find it profitable to deny insurance because you have the same name as someone in a genetic database. If they can eliminate the few people that might get some rare disease, it might be better for them in spite of the few false positives.