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You Can Donate Your Genome For Medical Research, But Not Anonymously

Soulskill posted about a year and a half ago | from the you-can-tell-by-the-base-pairs dept.

Privacy 58

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."

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58 comments

MY SEED IS PLENTY !! (0)

Anonymous Coward | about a year and a half ago | (#42625909)

So they all tell me !!

Re:MY SEED IS PLENTY !! (2, Insightful)

Anonymous Coward | about a year and a half ago | (#42626265)

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?

Re:MY SEED IS PLENTY !! (0)

Anonymous Coward | about a year and a half ago | (#42626441)

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?

Yet they still have oodles more credibility than the anonymous people who whine about being called tinfoil hatters. I wonder why that is?

Re:MY SEED IS PLENTY !! (0)

Anonymous Coward | about a year and a half ago | (#42626617)

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?

Yet they still have oodles more credibility than the anonymous people who whine about being called tinfoil hatters. I wonder why that is?

Because when they lie, they can afford the very finest marketers to lie to you smoothly and the very best lobbyists to enshrine their lies into law. All with no signs of remorse.

Is that what you're defending? Yeah you sure showed that other AC how much better those corps are! Way to go dude.

Re:MY SEED IS PLENTY !! (0)

Anonymous Coward | about a year and a half ago | (#42626625)

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?

Yet they still have oodles more credibility than the anonymous people who whine about being called tinfoil hatters. I wonder why that is?

Do they? Sounds like your personal problem.

Re:MY SEED IS PLENTY !! (1)

I Mean, What (2778851) | about a year and a half ago | (#42626565)

Evil will always triumph over good, because good is dumb.

Re:MY SEED IS PLENTY !! (1)

Runaway1956 (1322357) | about a year and a half ago | (#42626753)

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?

Re:MY SEED IS PLENTY !! (1)

cellocgw (617879) | about a year and a half ago | (#42626815)

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.

Another law (0)

Anonymous Coward | about a year and a half ago | (#42625941)

I suppose we need another law. *SIGH!

Re:Another law (3, Insightful)

Amorymeltzer (1213818) | about a year and a half ago | (#42625985)

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:Another law (1)

stranger_to_himself (1132241) | about a year and a half ago | (#42626061)

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).

Re:Another law (3, Interesting)

Archangel Michael (180766) | about a year and a half ago | (#42626123)

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.

Re:Another law (3, Insightful)

Charliemopps (1157495) | about a year and a half ago | (#42626431)

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.

Re:Another law (0, Troll)

Archangel Michael (180766) | about a year and a half ago | (#42626509)

Socialism requires government have this information. It is, IMHO, a violation of the Fourth Ammendment. But without a viable second ammendment, good luck protecting the rights enumerated under any of the others.

Re:Another law (0, Offtopic)

ColdWetDog (752185) | about a year and a half ago | (#42626861)

"Central Planets, thems formed the Alliance, waged war to bring everyone under their rule; a few idiots tried to fight it, among them myself. I'm Malcolm Reynolds, captain of Serenity. She's a transport ship, Firefly class. Got a good crew: fighters, pilot, mechanic. We even picked up a preacher for some reason, and a bona fide companion. There's a doctor, too, took his genius sister outta some Alliance camp, so they're keeping a low profile. You understand. You got a job, we can do it. Don't much care what it is."

Yeah, I like Western's too.

Re:Another law (1)

TubeSteak (669689) | about a year and a half ago | (#42627453)

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.

Re:Another law (1)

Archangel Michael (180766) | about a year and a half ago | (#42628351)

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.

Re:Another law (1)

Kjella (173770) | about a year and a half ago | (#42626701)

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.

Re:Another law (1)

Archangel Michael (180766) | about a year and a half ago | (#42626917)

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

Re:Another law (1)

WillAffleckUW (858324) | about a year and a half ago | (#42630423)

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.

Re:Another law (1)

Vellmont (569020) | about a year and a half ago | (#42627655)


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.

You just don't understand (0)

Anonymous Coward | about a year and a half ago | (#42627215)

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.

Re:Another law (1)

pepty (1976012) | about a year and a half ago | (#42628789)

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?

Bottom line (1)

Hentes (2461350) | about a year and a half ago | (#42625961)

Only donate your genome if you know that none of your relatives have done it.

Re:Bottom line (2)

Charliemopps (1157495) | about a year and a half ago | (#42626457)

and if they do it in the future?

Really? (5, Informative)

Antipater (2053064) | about a year and a half ago | (#42625969)

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? (1)

Anonymous Coward | about a year and a half ago | (#42626285)

Table record identified by primary key. News at 11.

And tomorrow: a special investigation of how related keys relate to related records.

Re:Really? (0)

Anonymous Coward | about a year and a half ago | (#42626327)

These are two entirely different identities. One is biological and the other is social. For example, I can see how people would be pissed if all of a sudden ALL the online identities would be associated with their social identity; then someone like you would say "these people gave away their social identity and now they're mad that someone discovered their onlien identities?"

Re:Really? (0)

Anonymous Coward | about a year and a half ago | (#42627385)

The social one has a simple foreign key relation to the biological one

Re:Really? (4, Interesting)

interkin3tic (1469267) | about a year and a half ago | (#42626461)

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.

Re:Really? (1)

infinitelink (963279) | about a year and a half ago | (#42628055)

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'll only be a problem if the lawyers twist things as usual; if they didn't offer a 100% guarantee I'd say the lawyers should be toothless in society: substance over form, and propriety over vagueness, "anonymous" is only so until someone OUTS you.

Well... (0)

Anonymous Coward | about a year and a half ago | (#42625973)

...I am not donating my comment anonymously! I do not want to be identified! :-)

Y-Chromosome is tied to your last name (3, Informative)

Anonymous Coward | about a year and a half ago | (#42626059)

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.

Re:Y-Chromosome is tied to your last name (1)

Coisiche (2000870) | about a year and a half ago | (#42626135)

Generally true, but I believe there's a significant incidence (about 10% is a figure I recall from somewhere) where the passed surname and Y-chromosone don't match.

Anyone got the accurate figure for that?

Re:Y-Chromosome is tied to your last name (0, Troll)

Anonymous Coward | about a year and a half ago | (#42626337)

Generally true, but I believe there's a significant incidence (about 10% is a figure I recall from somewhere) where the passed surname and Y-chromosone don't match.

Anyone got the accurate figure for that?

Go ask your mom; she'll know.

Re:Y-Chromosome is tied to your last name (0)

Anonymous Coward | about a year and a half ago | (#42631603)

> about 10% is a figure I recall

Univ of Denver in the US said it was over 20% in their state according to their large test. Of course they used only blood type so as they stated the actual number is much higher. You're underestimating the number of women that cheat on their husbands.

Re:Y-Chromosome is tied to your last name (0)

MSojka (83577) | about a year and a half ago | (#42626303)

Y-Chromosome tied to your surname? Even assuming your culture has surnames in the first place, that assumption is so wrong in its generality it hurts. Patrilineal naming convention is just one of many, and for example patrinomic (where your surname is derived from your father's name, as in "Jon Olafsson, son of Olaf Magnusson") is also often in use - for example in Iceland or many Muslim countries.

Insurance - Denied (4, Informative)

Maximum Prophet (716608) | about a year and a half ago | (#42626133)

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 [kaiserhealthnews.org]
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.

Re:Insurance - Denied (1)

coyote_oww (749758) | about a year and a half ago | (#42626891)

I have a genetic disease, and my RL last name is Brown. Good luck with that.

Re:Insurance - Denied (1)

coyote_oww (749758) | about a year and a half ago | (#42626929)

Thinking further, would you have a case if insurers amalgamated data and determined that Browns where x% more or less likely to have some condition? in other words, you can't discriminate on the basis of genetic testing, but could you technically work out a system to bias rates based on surname, and if so, what would be it's legal position?

Re:Insurance - Denied (1)

Maximum Prophet (716608) | about a year and a half ago | (#42627101)

That used to happen with mortgage companies. (There's a term for it, but I can't recall)

They couldn't discriminate based on ethnicity, but would exclude the parts of the city where certain people lived.

Of course, if we take this to it's illogical extreme, the insurance companies would go out of business if we could test exactly what diseases you'll get and when you will die. Insurance only works when there is uncertainty.

Re:Insurance - Denied (1)

Khashishi (775369) | about a year and a half ago | (#42627911)

You can still have accident insurance. We can't test for that yet.

Re:Insurance - Denied (1)

nitehawk214 (222219) | about a year and a half ago | (#42628047)

You can still have accident insurance. We can't test for that yet.

What genes have we identified for the accident prone?

Re:Insurance - Denied (0)

Anonymous Coward | about a year and a half ago | (#42628981)

You can still have accident insurance. We can't test for that yet.

What genes have we identified for the accident prone?

I forget where it is on the genome, but it's been shown to be linked to the other gene that influences neck color.

Re:Insurance - Denied (0)

Anonymous Coward | about a year and a half ago | (#42632935)

It's called redlining.

Re:Insurance - Denied (1)

Maximum Prophet (716608) | about a year and a half ago | (#42627013)

There are probably enough Browns and Smiths that it probably doesn't matter. However, if your last name is rarer, and 66% of the people with the name have something like Huntington's, you might be denied long term coverage.

Re:Insurance - Denied (1)

pepty (1976012) | about a year and a half ago | (#42628855)

when you apply for disability or long term care insurance: "Thank you Mr/Ms. Brown for your application. Your last step is to submit a cheek swab for genetic analysis" No law against it right now.

Research to scare people about DNA privacy. (1, Insightful)

A. Jamie Cuticchia (2818721) | about a year and a half ago | (#42626339)

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:Research to scare people about DNA privacy. (2)

ColdWetDog (752185) | about a year and a half ago | (#42626903)

Wait. What?

Where'd the twitter thing come from? Have we been invaded? (Grabs tinfoil).

I hate birds.

What??? (1)

jensend (71114) | about a year and a half ago | (#42626471)

You mean if I give someone 800 megabytes of unique personally identifying information, they might be able to personally identify me?

Shocking!

Re:What??? (1)

WillAffleckUW (858324) | about a year and a half ago | (#42630451)

You mean if I give someone 800 megabytes of unique personally identifying information, they might be able to personally identify me?

Shocking!

Thanks for leaving your cup in the diner. I used the DNA on that to sequence your genome.

No harm, no foul, right?

By the way, you should get your liver checked.

Still worth it (1)

backslashdot (95548) | about a year and a half ago | (#42626979)

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.

Rest assured (1)

ThatsNotPudding (1045640) | about a year and a half ago | (#42627269)

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.

Bad idea (1)

NoSalt (801989) | about a year and a half ago | (#42628531)

I think this is how Sam Bell got "trapped" on the moon.

Personal Genome Project blog post on this issue (1)

Slicebo (221580) | about a year and a half ago | (#42630829)

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/ [personalgenomes.org]

"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."

I wouldn't mind doing it... (0)

Anonymous Coward | about a year and a half ago | (#42631299)

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.

you may already have. (1)

slick7 (1703596) | about a year and a half ago | (#42632179)

Did you ever really read the release forms signed immediately prior to surgery?

Resurrection of a sort? (1)

PacRim Jim (812876) | about a year and a half ago | (#42632387)

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.
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