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Privacy Security Biotech Medicine Science

You Can Donate Your Genome For Medical Research, But Not Anonymously 58

Posted by Soulskill
from the you-can-tell-by-the-base-pairs dept.
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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You Can Donate Your Genome For Medical Research, But Not Anonymously

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

  • Really? (Score:5, Informative)

    by Antipater (2053064) on Friday January 18, 2013 @11:04AM (#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?
    • by Anonymous Coward

      Table record identified by primary key. News at 11.

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

    • Re:Really? (Score:5, Interesting)

      by interkin3tic (1469267) on Friday January 18, 2013 @12:01PM (#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.
      • 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.

  • by Anonymous Coward on Friday January 18, 2013 @11:16AM (#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.

    • by Coisiche (2000870)

      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?

    • by MSojka (83577)

      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 (Score:5, Informative)

    by Maximum Prophet (716608) on Friday January 18, 2013 @11:27AM (#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.
    • I have a genetic disease, and my RL last name is Brown. Good luck with that.

      • 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?

        • 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.
          • by Khashishi (775369)

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

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

              What genes have we identified for the accident prone?

      • 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.
      • by pepty (1976012)
        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.
  • 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
    • Wait. What?

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

      I hate birds.

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

    Shocking!

    • 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.

  • 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.
  • 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”

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