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Biotech Education

Scientists Hope To Attract Millions To "DNA.LAND" (nature.com) 32

An anonymous reader writes: Started by computational geneticist Yaniv Erlich, and geneticist Joseph Pickrell at the New York Genome Center and Columbia University in New York, DNA.Land is a project which hopes to create a crowdsourced DNA database for genetic studies. Nature reports: "The project, DNA.LAND, aims to entice people who have already had their genomes analyzed by consumer genetics companies to share that data, allowing DNA.LAND geneticists to study the information. Although some consumer genetic-testing companies share data with researchers, they provide only aggregate information about their customers, not individual genomes. Because the data are not always accompanied by detailed information on patients' health, they are of limited use for drawing links between genes and disease."
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Scientists Hope To Attract Millions To "DNA.LAND"

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  • Death by stoning (Score:2, Interesting)

    by Anonymous Coward

    Among other things, next-generation DNA sequencing is the ultimate paternity test. There's enough information to determine a person's entire family tree out to many generations. But there are still countries where adultery is punished severely (e.g. death by stoning). I'm a big believer in allowing people to get their genomes sequenced and to freely share information that would allow them to interpret their genomes (i.e. freedom of speech). But those of us who have grown up in modern "western" cultures are

  • by persicom ( 136940 ) on Monday October 12, 2015 @05:54AM (#50707681)

    Where's The Double Helix roller coaster?

    • by Anonymous Coward

      Don't complain. I went to Jurassic World, and not only was my girlfriend eaten by a pack of triceratops in the petting zoo, but all the animals were covered in scales and not even from the damn *Jurassic* period.

  • by Rainbow Nerds ( 4224689 ) on Monday October 12, 2015 @06:18AM (#50707741)

    I read the Nature article and, frankly, it's very troubling.

    Erlich has studied the potential for unmasking the identities of anonymous donors of genetic data, and the study's consent document warns participants that “we cannot guarantee that your identity and/or data will never become known, which could have significant implications in some scenarios. We estimate that the risk for such a confidentiality breach is low but not zero.” Erlich and Pickrell have adopted what they call a “skin in the game” philosophy by making their own genomes publicly available.

    "Usually, genomics studies suggest discussing your decision to participate with close family members," Meyer says. "Here, genomic data is combined with parents' names and dates of birth, both identifiers, so it was surprising that there was no mention of risks to family members."

    My DNA is unique to me, so there really is no anonymity to begin with. It's just not linked to my name, address, SSN, etc. This information would be a gold mine to insurance companies, doctors, pharmaceutical companies, and perhaps potential employers. There's so much potential for abuse and so little security involved. Furthermore, it doesn't seem like relatives have the option to opt out from being referenced here, which means my privacy might be at risk without my consent. Sure, it won't include my own DNA, but it's still a huge risk.

    I understand the scientific value of such a data set, but there's just way too much risk involved.

    • Re: (Score:2, Funny)

      by Anonymous Coward

      - We are very grateful that you chose our company to work as a umm.. Systems Engineer...
      - Yeah I've always wanted to work on Linux for a living.
      - ... however our genetics background check indicates that all your male paternal family members have the psychopath gene. With you being of sex.... umm.. male we fear that there is a good chance that your genetics could affect our performance as a group.
      - Sigh. Do you have any openings in management?

    • Re: (Score:2, Interesting)

      by Anonymous Coward

      But imagine someone near death. The privacy issues wouldn't be so pronounced in that case. It would be kind of like saying you want to posthumously donate your organs.

      Or heck if it were possible to sequence people who are already dead, someone could just save us all the trouble and dig up some old graves of people who died before mickey mouse. That stuff has got to already be public domain.

    • by Anonymous Coward

      Let's say you're living in the USA prior to the civil war and you happen to think that slavery is a bad thing. One approach to eliminating slavery would be based on privacy: require everyone to wear burkas and make it illegal to disclose a person's race: you can't force black people to be slaves if you don't know who the black people are. Another approach is to simply make racial discrimination (and slavery) illegal.

      On one hand, you can try to prevent abuses of personal genome data by having all kinds of la

      • by jc42 ( 318812 )

        ...

        On one hand, you can try to prevent abuses of personal genome data by having all kinds of laws to try to keep people's genome data private. On the other hand, you can make it illegal to abuse people on the basis of their genome data.

        ...

        This isn't a new idea. I've run across a number of explanations of a decades-old bunch of statistics: Scandinavia has contributed medical information extracted from health databases far out of proportion to the size of their populations or the number of medical researchers. The explanation seems to be that, rather than making medical data secret, they decided to make it fairly open (especially to medical and biological researchers), and passed laws with serious punishment for "abusing" the information.

    • Agreed, since most countries have laws and regulations concerning privacy on DNA, this is basically giving a private entity the go ahead to collect the data.
      However well intended the scientific data would be to researchers, there will always be some other entity whether a company or government agency that will try to take advantage of the same information.
      *Tin foil hat donned* This almost sounds like a means to say "Since we can't legally force you to provide DNA, we are just asking you to volunteer it"
  • They can have mine (Score:5, Interesting)

    by Behrooz Amoozad ( 2831361 ) on Monday October 12, 2015 @09:13AM (#50708431)
    They can get my DNA from my cold, dead hands.
    Very seriously, They can take it when I'm dead. Privacy won't matter to me then and the data is still useful for them. probably even more useful because they now have a cause of death which means more data.
    They should really consider this. Probably some sign-up process like they do for organ donors.

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