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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."
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?
Everything is better with chainsaws.
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.
I live in constant fear of the Coming of the Red Spiders.
It's pretty simple: Because Y-Chromosomes pass from father to son unchanged, and because last names also tend to pass from father to son unchanged, the Y-Chromosome can be linked to your last name. If you've got DNA info about someone's Y-Chromosome and their last name (in this case people gave that info to genealogy databases but it could just as easily be a police DNA database) then you can probably identify the last name of anyone else who is a match for that Y-Chromosome.
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.
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
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.
All ideas^H^H^H^H^Hprocesses in this post are Patent Pending. (as well as the process of patenting all postings)
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.