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Biotech Medicine Science

13,000 Volunteer To Put Personal Genomes Online 126

Posted by CmdrTaco
from the will-c0de-for-f00d dept.
Lucas123 writes "The Personal Genome Project, which opened itself up to the public on April 25, has to date signed up 13,000 of the target 100,000 volunteers needed to create the world's first publicly accessible genome database. Volunteers will go through a battery of written tests and then offer DNA samples from which their genetic code will be derived and then published to help scientists discover links between genes and hereditary traits. While the Personal Genome Project won't publish names, just about everything else will be made public, including photos and complete medical histories. Scientists hope to some day have millions of genomes in the database."
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13,000 Volunteer To Put Personal Genomes Online

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  • by BadAnalogyGuy (945258) <BadAnalogyGuy@gmail.com> on Monday May 18, 2009 @09:44AM (#27996495)

    I was surfing The Hun and accidentally put some of my genome on my keyboard.

    Thank goodness for Purell and Kleenex.

    • Re: (Score:2, Funny)

      by rcamans (252182)

      You know, we all thank you for your selfless efforts to personally finance the Purell and Kleenex industries. We applaud your heroic efforts, and call upon you to greater heights of achievement.

  • Genome? (Score:5, Funny)

    by Norsefire (1494323) * on Monday May 18, 2009 @09:46AM (#27996541) Journal
    Is there a similar project for KayDE?
  • bit late (Score:5, Funny)

    by LiquidCoooled (634315) on Monday May 18, 2009 @09:47AM (#27996555) Homepage Journal

    its a bit late,

    google images already says there are 286,000 pictures of gnomes already online.

    http://images.google.co.uk/images?q=garden%20gnome [google.co.uk] Results 1 - 20 of about 286,000

    • Re:bit late (Score:4, Funny)

      by castorvx (1424163) on Monday May 18, 2009 @12:16PM (#27999373)

      ... Results 1 - 20 of about 286,000

      I decided to verify your research.

      Results 1 - 20 of about 298,000

      OH MY GOD THEY'RE MULTIPL-*CONNECTION LOST*

      • Re: (Score:3, Funny)

        by STFS (671004)

        I decided to verify your research.

        Results 1 - 20 of about 298,000

        OH MY GOD THEY'RE MULTIPL-*CONNECTION LOST*

        I decided to verify as well and concur with your findings. 298,000 images of gnomes.

        I also found that turning off the "safe search" feature resulted in a total of 305,000 images being found.

        Can someone please tell me how I can get only those 7,000 additional images?!

        • by Yadyn (1374599)
          Actually yes, you can use UnSafe Search [google.com]. It works by performing two Google searches (one with SafeSearch on and one without) and then does the equivalent of an Oracle MINUS operation.
  • Data Control (Score:5, Insightful)

    by macbeth66 (204889) on Monday May 18, 2009 @09:49AM (#27996597)

    Just who is going to control these kinds of databases and prevent the misuse of the data? Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.

    • Re: (Score:1, Interesting)

      by ilblissli (1480165)
      who says you have to give them your real name? i personally just signed up to be involved in this project. i'll update my comments once i see what they require from you. if they want your full name and SS# yeah i'd probably assume it could be misused but if they just want a health history to go with your dna i don't see the harm in that.
      • Re:Data Control (Score:4, Interesting)

        by spydabyte (1032538) on Monday May 18, 2009 @10:03AM (#27996877)
        Ever watch GATTACA? Think about what they coined "discrimination down to a science". Databases do not need your name to figure out majorities. If insurance companies linked a mole on the left cheekbone to a higher probability of cancer... well, maybe you'd just get the mole removed.

        Nevertheless, I'm all for the advancement of science and am interested in contributing to the project. Who knows, maybe if all the pessimists advance the project, it'll be done properly.
      • Re:Data Control (Score:5, Interesting)

        by macbeth66 (204889) on Monday May 18, 2009 @10:03AM (#27996883)

        Good point. However, if they are not asking you for information that can be used to link directly back to you, then the database is waste of time. What will stop the mis-creants from stuffing junk into the data points? What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.

        • Re: (Score:3, Insightful)

          by gnick (1211984)

          What will prevent someone with a low priority condition, to submit as multiple people in an attempt to up the priority of their condition.

          If there are only 10s of thousands of samples, it shouldn't be too tough to notice if there just happen to be a dozen people with identical genomes. That said, the techniques here are young enough that identifying sequences for anything we can seems worth-while - From heart disease to freckles. So what if a rare, 'low-priority' condition gets identified?

      • Re:Data Control (Score:5, Insightful)

        by fuzzyfuzzyfungus (1223518) on Monday May 18, 2009 @10:07AM (#27996957) Journal
        Luckily, nobody else out there would have access to your medical history and a strong financial interest in knowing what your genome contains. Definitely not an insurance company or anything. And identifying somebody with date of birth, blood type, family history, several facial photos, and a bunch of other information is certainly beyond the powers of science...

        Definitely not a problem.
        • Re: (Score:3, Interesting)

          by astrashe (7452)

          Do they have something on the web site about this?

          My reaction when I read the story was (a) Wow, I really want to do this, and (b) what if I'm denied coverage at some point down the road because of it?

          As soon as I'm really confident that I won't get burned, I'm in.

          • Re: (Score:3, Insightful)

            To their credit, the participation page [personalgenomes.org] is reasonably forthright about what will be disclosed, and I'm sure that if you dig a few links deeper, you'll find more. If you really want the gory details, I'm sure that the IRB has a thick pile of documents somewhere.

            Nothing they say, though, suggests any comfort with respect to denied coverage. They can't protect you and it isn't their problem. I'm predicting that the volunteer rolls will be heavy on a) wealthy futurists/futurist-wannabes, b)young techy futuri
          • Re:Data Control (Score:4, Interesting)

            by Ephemeriis (315124) on Monday May 18, 2009 @11:55AM (#27999027)

            what if I'm denied coverage at some point down the road because of it?

            It's only a matter of time.

            Modern insurance policies can deny you coverage due to a pre-existing condition. It won't be long before we're able to identify all kinds of disorders and diseases with a simple genetic screening. Then we just call having a 90% chance to develop cancer a pre-existing condition, and you're screwed.

            It is going to happen.

            • It won't be long before we're able to identify all kinds of disorders and diseases with a simple genetic screening. Then we just call having a 90% chance to develop cancer a pre-existing condition, and you're screwed.

              There is a law against that [genome.gov] that just went into effect.

              Also, people don't actually have that many lethal genes. There's the whole natural selection thing going on.

              • Re: (Score:3, Interesting)

                "The law does not cover life insurance, disability insurance and long-term care insurance." And, if that is the website one liner, I'm guessing that there might be a few other little areas of wiggle room. You can generally find a reason.

                As for lethal genes, people don't have many that kick in before/during reproductive maturity. You then have another 30-45 years that you might like to live; but for which selective pressures have historically been a good deal weaker.
            • by rcamans (252182)

              Recently a woman was denied an insurance payout on her husband's death (he was gunned down) because he had a pre-existing medical condition which had nothing to do with the shooting death.
              Insurance companies are in the business of screwing you.

            • by StikyPad (445176)

              I don't think they'd pull the "chance of getting cancer card," nor would they need to with all the real genetic disorders [wikipedia.org] out there. In fact, I'd wager heavily that *everyone* has a genetic disorder of some kind, even the disorder itself hasn't been identified yet. Put another way, nobody's perfect.

            • You're not screwed. You just have to place the bet earlier. For instance, your parents could take out "pre-existing condition" insurance when the pregnancy is first determined, but before it's safe or practical to do a test for such conditions.

              Insurance is gambling. If information is available it will be used. You can't make things fairer by forcing one party to ignore information that all parties have access to.

              • Insurance is gambling. If information is available it will be used. You can't make things fairer by forcing one party to ignore information that all parties have access to.

                That is very true.

                And, I think, that's the root of the problem most people have with the insurance companies... It is a gamble, and they're in the business to make money. It is in their best interest to deny coverage to folks wit pre-existing conditions, and to deny as many claims as they can.

                But when it comes to something as important as your health or your house, people don't want it to be treated as a game. Folks don't want to feel like they're just a mark.

                • Indeed. Yet, failing to think of it as a game, they end up being manipulated by people who play by different, hidden rules. For instance, folding the health care industry, fully an eighth of the us economy, into the auspices of the federal government.

    • Anonymous Shnonymous (Score:3, Interesting)

      by dmomo (256005)

      Putting your genetic composition online is pretty much uhm... identifying yourself.

      Given a name and an entire frickin gene sequence... I'd more quickly rely on the latter for identifying an individual.

      Who knows... maybe at some point there will be software that can generate a speculative image of a person baed on the data in genes.

    • Re:Data Control (Score:5, Informative)

      by RDW (41497) on Monday May 18, 2009 @10:08AM (#27996975)

      'It may well be anonymous today, but that can not be guaranteed into the future.'

      It's not that anonymous even today:

      'While volunteers won't have their names published with their genomic information, Church said the subjects are completely aware that anyone familiar with them can deduct from the photos and background information who they are.'

      Some early volunteers in the pilot program have gone even further than this, and explicitly linked their names to the public data.

    • Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition

      Without gathering a significant number of genomes, how could anyone identify which illnesses are hereditary, much less try to find a cure?

      I'm willing to bet that in the next 30 years we will have "personal drugs" tailored to a specific genome made by a desktop machine.

      • And still, we will not have any "drugs" that actually heal people. They will still just make you depend on them, because they only take away the symptoms for just until you have to take the next pill.

        People, please realize this: Nearly all health problems are better prevented than fixed later. Most of the time it's way easier too. But species-appropriate food and sports are so uncool, right? Sometimes I wonder, why we geeks aren't the one with the most perfectly running, properly maintained bodies. After al

        • by russotto (537200)

          People, please realize this: Nearly all health problems are better prevented than fixed later. Most of the time it's way easier too. But species-appropriate food and sports are so uncool, right?

          Eat healthy, stay fit, die anyway.

    • Re: (Score:2, Insightful)

      by Anonymous Coward

      Just who is going to control these kinds of databases and prevent the misuse of the data?

      Isn't that the exact opposite of the point?

      That is, isn't the objective of this project to gather data from people who have given their informed consent to 'open-sourcing' their medical data, in order to free researchers from the burdens imposed by working with non-open-source data?

      Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition. It may well be anonymous today, but that can not be guaranteed into the future.

      This project isn't anonymous now, and doesn't claim to be! That's the point - genetic data with medical histories and photographs alongside.

      If, in the future, medical insurers decide to discriminate based on genetic tests, they w

    • Re:Data Control (Score:5, Informative)

      by Autumnmist (80543) on Monday May 18, 2009 @10:47AM (#27997723)

      That's why the US has GINA [genome.gov] (Genetic Information Nondiscrimination Act (GINA) of 2008).

      Whether it'll actually work is a separate issue. One of the points of this project is that trying to keep your genetic information private is a losing battle and that it might be better/neutral to just be open about it.

      • by omris (1211900)

        Besides, insurance companies have become experts at denying coverage. They are: 1. legally obligated not to discriminate based on genetic information, and 2. totally unhindered by that fact. Why would they bother to start trying to use genetics when they can pay a few doctors to write letters explaining why your requested procedure isn't medically necessary? It seems to work pretty well for them.

    • Once a condition or a hereditary pre-disposition is determined, a subject could be denied medical coverage for that condition.

      I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?

      • by Kadin2048 (468275)

        I can't believe this could even be an issue. Why don't your lawmakers make it illegal for those responsible for financing medical care to discriminate against people with illnesses?

        Because at any given time, most voters either are, or think that they are, healthy; thus they're pretty receptive to arguments that eliminating pre-existing condition restrictions would raise their own costs. Basically, nobody who's healthy wants to pay for anybody else's healthcare.

        Of course, when those people get sick it's a d

    • by rcamans (252182)

      Don't worry. Slashdotters do not have to worry, as video game addiction, pron addiction, and living in yo momma's basement are not genetic defects. Are they? Oh,Ohhh

      • by rcamans (252182)

        Hey, if slashdotters contributed, maybe they could find cures to these diseases. Oh, wait, there's that aversion to sunlight. I think I first heard of it in the H.G. Wells movie "Time Machine".

    • by kieran (20691)

      Speaking as a volunteer (although I live in the UK so won't be included in the current phase), I expect my data to be (somewhat) misused. I just think the good this project will acheive is well worth the sacrifice.

      By the by, the process of "consenting" to be a member of this project involves getting a 100% pass mark on a pretty involved exam about DNA, the project and the risks involved. Apparently this is because they "take informed consent very seriously".

  • I for one! (Score:2, Funny)

    by Sigg3.net (886486)

    Am I the only one who read: 13,000 Volunteer To Put Personal Gnomes Online ??

    Imagine an army of garden gnomes.. Well, I for one! Oh, forget it.

  • It's quite the logical extension of the project after all! Finally we can have a REAL gnome interface!

  • Didn't the alien conspiracy already do this?
  • And insurance companies start to tag you according to your DNA/vulnerability score. Watch what happens when they will be able determine that you have Alzheimer's related genes in your DNA.
    • Re: (Score:3, Insightful)

      by ID000001 (753578)
      So let's get rid of insurance companies and start insuring everyone? I know I know that is like a whole other can of worm, but while this (slashdot) is a US based website, personal genome project is a world wide project, and large majority of the world doesn't have insurance or preconsidition problem. Why keep pointing this issue out when it fairly localized? I am a canadian, and I will be fairly happy if they know more about how to treat me.
    • What will happen is the death of private healthcare, and not a moment too soon.
  • The article contains an image of a pile of chromosomes, and the caption reads

    The X and Y chromosomes that make up a genome.

    Believe it or not, X and Y chromosomes aren't the only ingredients...

  • by Captain Spam (66120) on Monday May 18, 2009 @10:32AM (#27997431) Homepage

    While the Personal Genome Project won't publish names, just about everything else will be made public [...]

    Why do we need the names? Just take the genome data and use it to concoct an unholy abomination, mocking the laws of God and man, making a soulless clone of the person in question, rousing the populace to chase you down with torches and pitchforks in an attempt to stop pure genius their pitifully small minds could never truly understand, and just ASK what his/her name is?

  • ... the make-up of J Craig Venter's genome, as he used himself for human DNA in the first draft. It doesn't seem to have hurt him too much to have that information out.

    Although indeed if the US would at least catch up to 1960's era Europe and institute universal single-payer health care, I would be much quicker to volunteer for this. Unfortunately as others have pointed out there is abundant opportunity for our for-profit insurance companies to abuse this information to make our lives more difficult (an
  • The discoverer of the structure of DNA was the 3rd person fully sequenced. 20 of his genes appear in the bad gene database (@5000 entries). None of these have been expressed yet at his ripe old age of 80+.

    Sergey Brin is worries about finding a Parkison's gene in his genome. But he doesnt need to be overly worried.
    • Genetics is still in its infancy. We don't know how or why genes are expressed!
    • Re: (Score:3, Interesting)

      "The" discoverer of the structure of DNA was a group of seven people three of whom won a Nobel prize for it .. Watson, Crick, Wilkins, Stokes ,Wilson, Franklin and Gosling

      Rosalind Franklin died of Cancer before she could be nominated for the Nobel prize ...

      • Rosalind Franklin died of Cancer before she could be nominated for the Nobel prize ...

        or, they waited until she died of cancer before they awarded the nobel prize.

  • Personally... (Score:1, Redundant)

    by Yaa 101 (664725)

    My opinion is simple: Pay me a figure with at least 6 zeros behind them or fuck off.

  • Facial recognition (Score:3, Interesting)

    by wealthychef (584778) on Monday May 18, 2009 @11:06AM (#27998137)
    And in other news, Apple and others are mainstreaming the use of software to recognize faces, so the omission of names from the database is really a laughable gesture towards privacy. These folks are taking a risk, for sure. But hey, no risk, no rewards. I applaud them.
  • Ok, as a person who has done DNA tests for himself and believes in the value for people working together on this, I believe this is just terrible.

    People value their privacy, and for DNA research to make progress, they need as many people involved as possible, which has not been done yet. Less than 0.0000001% of the world has had their DNA tested. So, for that to be able to be done, their privacy needs to be ensured. People, being concerned about identity theft, use of their own information for negativ
  • TFA states they need one byte per base pair resulting in 6 gigabytes per subject.

    My guess is there is a huge sequences of duplicates so compressions could probably bring this number down quite a bit.

    Also, since a byte can store 256 distinct values would it be able to handle more then just one base pair.

    • Since there are four different bases, you need two bits to store a pair, which means you could get 4 bases into a byte without using any non-trivial compression method.
      But given that the genomes of different people are very similar, they should already save a lot of memory by storing just diffs to a "standard" genome (say, the sequence from the Humane Genome Project).

  • Isn't the plural of "volunteer", "volunteers"?
  • Scientists look at his DNA, just to admire a job well done.
  • How many people must be sequenced until there is enough genetic coverage to interpolate?

    I mean, I have a certain genetic code, and I share a good deal of that genetic code with my mother and father, right? And my siblings and I have similarities as well, I assume.

    Using similar methods to those that we use for DNA testing of maternity or paternity, how many people in a given group must have their genes sequenced before you could, say, have a 50% chance of getting a match on a given bloodstain or fingernail a

    • The number of people that must be sequenced to interpolate data on a disease depends on what the prevalence of that disease is in the population. A disease like xeroderma pigmentosum is quite rare and would require hundreds of thousands of genomes, while something more common like the BRCA1 gene mutation that leads to a susceptibility to some breast cancers would take 10 to 100 times fewer.

      In reality however, each individual has unique mutations that may or may not effect their susceptibility to disease
  • ...they will come alive to mine zikspot in the torture mines the evil lord emperor Zarguf runs on the planet zzebildiz!

    • by Nathrael (1251426)
      Hey, sounds cool. You should start a religion...eh, cult about that. Worked for Scientology, might work for you as well.
  • It seems like the initial human genome sequencing took several years, ending back in 2003 or thereabouts. Just how fast is the process nowadays? I trust, if they plan to sequence DNA from tens of thousands of individuals, it must be multiple orders of magnitude faster than what the original sequencing took????
    • by jr76 (1272780)
      People are not aware that there is no complete gene sequencing available to the masses yet.

      I do believe you could get a private study to do yourself entirely, at around $200,000 if you had that much money to burn. At the rate progress is occurring, in 2-8 years full sequences will be possible for most people (at somewhat of a premium price).

      Regardless, 99% of our genes are identical, so what's done now, focusing on the 1% that fairly rapidly mutates (every~100-500yrs), is almost all of what people wi
  • I've never had such conflicting diametrically-opposed thoughts then that I fully agree with the project, and think of how many great things this project has the potential to produce.

    Possibly a cure for cancer.

    Perhaps a flawless man-machine interface

    (Recursion alert) A flawless man-machine interface and the potentials for both extreme good and extreme evil. But in that case, for a certain percentage of these people, there may be generations of my descendants cursing my act. With a perfect man-machine interfa

  • They want to know your most intimate secrets but they don't want to tell you who they are.

    Doesn't this bother _anyone_?

    Jumping around their web site you'll find a reference to Harvard and some people who seem to be scientists. There doesn't seem to be a clear indication of where the money is coming from or who is really behind this project.

    Doesn't this bother anyone?

    So often we give our personal information over the internet to people who haven't the decency to give us an email address (Yahoo, Google, Faceb

  • I hope mine's an astronaut!

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