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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."
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.
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.
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).
It would have been enough for the subject's family to have posted the genealogy information - the subject may have known nothing about it. Still, you are right its not the fault of the researchers (as its impossible to fully anonymise a dataset while retaining its research usefulness).
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)
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?
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.
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.
You mean if I give someone 800 megabytes of unique personally identifying information, they might be able to personally identify me?
Shocking!
Evil will always triumph over good, because good is dumb.
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 give someone private information on the premise that it can't be tied to your person and that turns out to be false, of course that is a violation of your privacy even if it's nobody's fault. Personally I like some of the benefits of privacy like democracy, can't have that without private voting. Privacy is no more an illusion than free speech or due process, it exists if you make it so. But just like countries where you have no free speech and no due process, you can have no privacy too. But I wouldn't exactly call it a goal. P.S. It's always rich to hear "privacy is an illusion" from someone using a nick to avoid linking their posts to their identity.
Live today, because you never know what tomorrow brings
Albert Einstein explained it already. People are insane. They keep doing the same thing, over and over, expecting new and different results. Pretty simple, isn't it?
"Windows is like the faint smell of piss in a subway: it's there, and there's nothing you can do about it." - Charlie Br
Albert Einstein explained it already. People are insane. They keep doing the same thing, over and over, expecting new and different results.
And yet, when it comes to procreation, ask any parent: every kid is radically different from the previous models. The insanity here is that us parents foolishly expect the next time around to be the *same* as previous results.
https://app.box.com/WitthoftResume Code: https://github.com/cellocgw
If you give someone "private" information, it isn't private anymore. That is the nature of privacy and information. Once you tell somebody something you are at their mercy to keep it to themselves. If you want to keep a secret, don't tell anyone
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
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.
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.
Socialism requires government have this information.
1. Why does socialism require the government to have your DNA?
2. Is the lack of DNA the reason that previous attempts at socialism have been less than fully successful?
But without a viable second ammendment, good luck protecting the rights enumerated under any of the others.
Has the soap box or ballot box failed your country yet in 200+ years?
I'm not against gun rights, but I am against the mentality that only guns can protect your rights.
[Fuck Beta]
o0t!
It isn't the fault of anyone....
Given enough information, it will always be easy to identify specific individuals with relative certainty.
The situation is avoidable because the research data included too much identifying information. How relevant is the persons age for instance? How relevant is the specific place of birth (City for instance vs region).
There's a way to publish the data with enough uncertainty about who the individual is to make identification impossible, or extremely unlikely. I don't know if that makes it anyone's "fault", but I will say that it's obvious that changes in what data gets associated with the genome record will fix the problem.
AccountKiller
1) Socialism, reporting compliance to the authorities. The moment it becomes "beneficial" to have DNA on record by the government, it will be required. Already, we are required to provide government agencies proof that we have certain things like Vaccinations and TB tests. When it becomes clear that certain gene traits lead to pedophelia then DNA scanning will take place ... "for the children". Because it hasn't happened yet, doesn't mean it won't. The question is, how much "privacy" do you have when "saftey" is on the line (hint, Naked Scanners in the airports).
2) Socialism fails because it is based on "Rose tinted glasses". DNA has nothing to do with why socialism fails. DNA however, will be the goal of any totalitarian regime, as a means to control population via fear, i.e. "These people have the gene for _________ (any unwanted/subversive quality) and we need to control them ... for their own good!" It doesn't even have to be accurate, as the current Obama rants on guns prove, just "scare the populace". Again just because it hasn't happened, doeesn't mean it won't.
Yes, the soap box has failed, ballot box has failed. Hell even leftwingers think the 2000 election was "stolen" by GWB. Keep in mind, I'm a Libertarian, so I am a bit jaded with current (R) vs (D) lame debates. As for Guns, name a totalitarian regime that hasn't banned guns, and I'll show you a regime quickly toppled. GUNS are the last resort, and when you remove the guns from the people, the government has all the guns, all those "Jack Booted Thugs" the OWS people are protesting against, will have all the power. Lastly, the reason why Democracy has worked here for the last 200 years is because our governemnt feared the populace. Germany 80 years ago, was swept up by a guy who banned guns on his way to totalitariansm, how well did that work out for Europe? And remember, it was us YANKS that had to rescue Europe from its own short sightedness.
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
Still, you are right its not the fault of the researchers (as its impossible to fully anonymise a dataset while retaining its research usefulness).
For researchers the way forward is to restrict access to their data. Stored data is encrypted, email/FTP is encrypted. HIPAA enforcement and potentially being banned from access to clinical trial data (in the case of egregious carelessness) would be good motivators to maintain good IT practices.
On NPR they pointed out that while it is illegal to deny or charge more for health insurance based on genetic information it is perfectly legal to deny life insurance or long term care insurance on that basis. They came pretty close to pointed out that a private model for long term care insurance just won't work once people have a handle on their risk factors, but backed off saying a public model would be better
What I wonder about: Say your relatives make their genotypes public resulting in you not being able to purchase long term care insurance. Would that be actionable?
If you give someone "private" information, it isn't private anymore. That is the nature of privacy and information. Once you tell somebody something you are at their mercy to keep it to themselves. If you want to keep a secret, don't tell anyone
I think you're failing to get the point.
The people involved signed legally enforceable consent forms which specifically mandate what data authorization and sharing are permitted.
The problem lies in the interpretation that release of bits of information did not violate these IRB approved contracts, when in fact, as a number of panels at scientific conferences had warned, they did violate these IRB approved contracts.
By the way, like your hair.
-- Tigger warning: This post may contain tiggers! --
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."
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.