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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."
So they all tell me !!
I suppose we need another law. *SIGH!
Only donate your genome if you know that none of your relatives have done it.
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.
...I am not donating my comment anonymously! I do not want to be identified! :-)
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.
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)
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.
You mean if I give someone 800 megabytes of unique personally identifying information, they might be able to personally identify me?
Shocking!
All I can say is that given the advances possible, the slight loss of privacy is worth it .. So if you do have the chance to volunteer for something like this do it. It's likely more dangerous to have a Facebook account where you talk about or your friends talk about your ailments.
This wasn't a data set that was compromised because they released too much metadata. DNA, like, facial photos have the special characteristic that it is unique in and of itself.
In the terminology of experts on data privacy, the researchers who released this data set made the mistake of thinking that DNA is a quasi-identifier when it is actually a unique identifier. They did the equivalent of releasing a list of credit card numbers with only the FIRST four digits redacted - doh! We're not yet smart enough to read everything the DNA identifier says but sooner or later we will be.
Both the data and procedures have been copied by the NSA and National Security Letters sent to all involved. Endless War means Endless Spy^H^H^H Vigilance.
I think this is how Sam Bell got "trapped" on the moon.
George Church's "Personal Genome Project" has, from it's very beginning, acknowledged the possibility of this kind of exposure. In fact, you can't participate in the project without signing a consent form that makes this explicit. From their website:
http://blog.personalgenomes.org/2013/01/17/genome-re-identification-in-the-news/
"Since its founding, the Personal Genome Project has only accepted participants who understand and acknowledge re-identification as a potential risk. This “open consent” approach arose from our argument that privacy may be over-promised and that re-identification is increasingly possible as technology advances."
If I could release it under GPL or a CC license. (Whichever applies better.) If it's going to be openly available to the public, the results of whatever it's used for should be under those same terms as well.
Did you ever really read the release forms signed immediately prior to surgery?
The mind conceives, the body achieves, the spirit manifests.
Suppose that future humans decide to use historical genomes to reincarnate past humans. Would you want your body restored? If so, you'd better have your chromosomes sequenced.