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Privacy Security Biotech Medicine Science

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

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  • Really? (Score:5, Informative)

    by Antipater ( 2053064 ) on Friday January 18, 2013 @12:04PM (#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 on Friday January 18, 2013 @12:16PM (#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.

  • Insurance - Denied (Score:5, Informative)

    by Maximum Prophet ( 716608 ) on Friday January 18, 2013 @12:27PM (#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.

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