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The Personal Genome Project Hits the Web 87

Posted by CmdrTaco
from the are-those-bugle-boy-genes-you're-wearing dept.
Ian Lamont writes "The Personal Genome Project has released the data sets and descriptions of traits, ethnic background and other information of the first ten volunteers, which include the project director and nine other people with backgrounds in genetics, medicine, and biotechnology. While the human genome was first sequenced at the beginning of this decade, what's special about this project is these 10 participants are having their names, genome, and other personal data gleaned from questionnaires shared openly on the Web, where interested researchers can freely access them. One of the ultimate aims of the project is to create a public database of 100,000 volunteers that researchers and other parties can use to determine what traits, diseases or other characteristics are associated with specific genetic markers. When asked why volunteers are requested to attach their names to the Web records, the project director said the data could be used by researchers in other fields outside of genetics, including forensic science and historical research. While this project opens the door for some interesting and potentially life-saving research, there may also be difficulties or problems for people whose records are posted on the Web. Would you participate? Would you share your name, along with your genome, disease history, and traits? Why or why not?"
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The Personal Genome Project Hits the Web

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  • by davidsyes (765062) on Tuesday October 28, 2008 @05:40PM (#25547819) Homepage Journal

    Persona GNOME Project...

  • Privacy (Score:5, Insightful)

    by internerdj (1319281) on Tuesday October 28, 2008 @05:40PM (#25547823)
    I think it is a bit overdone in many cases. I'm quite free with my personal information compared to some of my friends, but I think it might be a scary thing to provide my medical and genetic history anywhere it might be accessed by my insurance company. And that alone is a sad, sad thing.
    • by Trojan35 (910785)

      Or employers, or banks...

    • by Odabi (982392)
      I've got one word to say to that... word...
    • What privacy? (Score:3, Interesting)

      by denzacar (181829)

      but I think it might be a scary thing to provide my medical and genetic history anywhere it might be accessed by my insurance company.

      You ever heard of "investigators"?
      Insurance companies have entire divisions of those.
      Granted - it costs way too much to use them just to get your premium up, but be sure that when the time comes for you to actually USE your insurance for intended purposes - someone, somewhere will happily give your private info to "The Investigator" in exchange for a relatively small amount of money.
      Or no money at all. Much info can be acquired just by asking the right questions in the right way.

      And in most cases - your pri

    • In theory, the problem of insurance companies and employers discriminating based on genetic information in the US has be 'solved' by the passing of the Genetic Information Nondiscrimination Act (GINA) this year. I say in theory, because I expect they will find some loophole to enable them to exploit this information anyhow. But we will have to wait and see .... ( http://spittoon.23andme.com/2008/05/21/its-official-bush-signs-gina/ [23andme.com] )
    • by daem0n1x (748565)
      That's why you need a public and free health care system, and bloodsucking insurance companies should go down the drain.
      • Unfortunately, at least currently, our public and free to some health care system is also bloodsucking. I doubt that would change even if it was the only kid on the block.
  • Come again? (Score:5, Insightful)

    by Aphoxema (1088507) * on Tuesday October 28, 2008 @05:43PM (#25547849) Homepage Journal

    Sorry, what did you ask, again? I was too busy registering to participate in one of the few things in my life I can do that can actually benefit all of humanity.

    • Re:Come again? (Score:4, Insightful)

      by davester666 (731373) on Tuesday October 28, 2008 @06:11PM (#25548181) Journal

      Yes, it can benefit everybody except yourself. At best, your DNA will show you have no predisposition for various diseases, so you can continue to get health care insurance. However, if you show any predisposition to any disease, the likelihood of you being able to get insurance goes down really fast.

      And it's not just you. Depending on the predisposition, having this information public can also affect your children's ability to get insurance (as there are plenty of conditions that may be inherited).

      • Re: (Score:1, Insightful)

        by maxume (22995)

        Insurance companies are better at being insurance companies than you are.

        Pretty much everybody has a predisposition to something, and the research backing these predispositions isn't particularly rock solid (that is, someone who drinks a lot will probably have more health problems than someone with a gene that has sort of been associated with some forms of a particular cancer), so they would certainly use the information, but it wouldn't be the denial of coverage that you are talking about, it would be slig

        • Re: (Score:3, Interesting)

          by davester666 (731373)

          How about Huntington's, for example. If you have the gene, it's not a question of if you get the symptoms, but when. For the purposes of insurance, this makes it a pre-existing condition.

          Yes, there are some conditions that current genetic testing will indicate that you have a higher percentage chance of getting that condition. But there are other conditions which have pass/fail testing. If you fail one of those tests, you don't get to purchase insurance for that condition. At best, you get to negotiate

          • by maxume (22995)

            I see two solutions. One is to just have society pick up the tab (I don't see that it makes a great deal of sense to slice subsidized health care into a bunch of arbitrary pools). The other is conception insurance (that is, actual insurance against the potential baby having a genetic condition, not contraception or something snarky). Of course, people with a family history of genetic disorders would have to pay quite a bit more for conception insurance than people with cleaner histories, but I'm not sure I

      • by Ghubi (1102775)
        Maybe GP lives in Canada, or France, or Cuba, or...
      • With a public funded health service, you may well find plenty of British Volunteers. Honestly it is not that much in tax to ensure you get the treatment you need. A basic pension when you retire and a number of other benefits.
          It's just such a pity dental care doesn't get similar provision.

        Is it even necessary for living volunteers? surely someone who has reached the end of their life and has a full medical history would be a better subject.

             

      • Re:Come again? (Score:4, Interesting)

        by evilNomad (807119) on Tuesday October 28, 2008 @08:08PM (#25549319)

        How I pity the citizens of what they themselves call the greatest nation on earth, how can you not see the benefit of research into DNA? How can you live with a health care system that is so broken that you fear the very breakthroughs that can save your live some day?

        All the (socialist as I am sure McCain would call us) countries of the world will gladly have all citizens screened for various DNA predispositions, you know why? Because we can use it to make health care cheaper, if we can prevent diseases we save a ton of money, if we can catch cancer and other diseases before they spread, we save a ton of money, oh and lives will most likely be saved as well, not that that seems to have anything to do with healthcare in the USA..

        I honestly do pity anyone that has to fear their own health care system..

        • by FooAtWFU (699187)
          Part of the huge problem is that people think they want "health insurance" when what they actually want is a healthcare plan (and one that other people pay for when the things get rough). I mean, you don't see people crashing their car and then saying "oh, I should get some car insurance for that, and they'll pay for it" or having their house burn to the ground and thinking "oh, I should get some fire insurance, and that will pay for it". It doesn't work that way. But people try to twist it until it does.
        • by pretygrrl (465212)

          that can save your live some day?

          All the (socialist as I am sure McCain would call us) countries of the world will gladly have all citizens screened for various DNA predispositions

          yeah except you can't afford the screening, can you? or new scientific discovery? u all just leach off of us. tell you what. you go find a list of scientific discoveries from any 1 year during the last 20 that isn't completely and utterly DOMINATED by U.S. paid-for research, and then MAYBE ill think about socialized health care, ok?

          • by evilNomad (807119)

            Oh give me a break, because I know you did not just call a Scandinavian country poor.. Hell, I actually even worked for the bioinformatics department at my university, but I guess none of our published articles are worth anything.. And of course a country of 300 million will churn out more research than a small nation with 5 million inhabitants, but we do our fair share of research.. Long story short, we can afford all the health care we need, including DNA screening... And I actually do not see your link b

            • by pretygrrl (465212)

              And I actually do not see your link between nationalized health care, and money invested into research, what exactly do those two have to do with each other? The taxes we pay to the state that goes into research have nothing to do with our health care system, as it is not the state that runs that..

              nationalized health care == paltry funding == no new research sponsored. and of course u dont NEED to pay for research because WE do so. i wasnt comparing usa w. 300 MM to sweden. i was comparing to the eu. once again, please show me a single list of discoveries of note, for any year during the last 20, that isnt completely and utterly dominated by U.S. paid-for research. im saying nationalized anything sux because governments cannot by their nature make purchasing decisions as efficient as a free market ca

              • by evilNomad (807119)

                I don't think you know how research works in Denmark where I live, the state is funding basic research, not the health care system, I am having a hard time seeing how you can key these two together? And I fail to see why we are bringing the EU into this? I have no idea about research results, but I very much doubt that the US single handily does all the research in the world, but as I have no sources to back this up I wont comment on it. My point however is that I don't care about results for the EU, Denmar

      • You guys are both missing the point. Sure, it benefits humanity, fine. But it would benefit me.
        The more I know about my medical situation,and the sooner I know it, the better choices I can make. I went to the site to sign up, but the small print says they want $1000, so that lets me out - I have other priorities for $1000.

        Post is insightful and underrated.

        • by tsa (15680)

          From the website: Even though participants can enroll at no cost, we encourage donations.

          • Right, but on the application, it says there's a $1000 fee. You can apply to have that waived, but I wouldn't count on it.

            • by tsa (15680)

              I didn't delve in that deep. But that means basically thet you have to pay $1000,- to have other people earn money with your genes. I mean, if the research on your genes leads to certain medication, that will lead to lots of profit, of which you will never see a dime. Besides, people can patent genes that are specifically yours, for instance if you have an interesting discrepancy in one of your genes. No thanks, I will never participate in this project.

        • Sure, you can make better choices for yourself. But others also use this information to make decisions that affect you, and not necessarily to your benefit.

          It really depends on the individual, the outcome and where they live.

          Currently, if you happen to live in the US, and are not independently wealthy, it is to your personal advantage not to have testing like this done.

          Say you want to be tested for Huntington's Disease in the US. There is a genetic test for it that is basically pass/fail. You either have

    • by jc42 (318812)

      I was too busy registering to participate in one of the few things in my life I can do that can actually benefit all of humanity.

      Well, you can expect to be punished in due time. ;-)

      Actually, this is a situation similar to the old "prisoner's dilemma" game. That's the game theory name for a class of situations in which, if everyone cooperates, everyone benefits, but if some people cooperate and others defect, the defectors win and the cooperators lose.

      There is a small chance that having your info in this dat

      • by Aphoxema (1088507) *

        I'm really not worried about insurance, and not so worried about jobs. I've come so damn near death so many times it just always feels like it's around the corner anymore. I don't have to cling to my own life, now I cling to everyone else's, and despite my asthma, I do what I can to help but it always seems so very little.

        I'm already donating my body to science, this way I can do it before I'm dead.

    • by whackco (599646)

      It's interesting because this company I found: AccessDNA [accessdna.com] are doing the same thing, but not making the informating publish. They provide a personalized Genetic report for free just for answering these questions.

  • by TheModelEskimo (968202) on Tuesday October 28, 2008 @05:51PM (#25547945)
    Someone should take the available profile info and turn it into a simulation. I would like to see how Participant #2, the vegan who used to suffer from Lyme disease, would fare in a fight against #3, the frequent traveler who suffers from "severe, short-term (24 hours) diarrhea," and is near-sighted with contacts.

    Also, I'd like to know, what if we had a breakdancing contest, RIGHT now. Who would come out on top? How would Participant #10, who had a "hip growth" removed at birth, do the Windmill? Etc. Inquiring minds want to know.
    • Re: (Score:3, Interesting)

      I'd like to mine the hell out of the data(safely and privately under academic/research sponsorship) to see how strongly environment correlates with genetics to see just what makes people who they are.
  • your name (Score:4, Insightful)

    by forceofyoda (855030) on Tuesday October 28, 2008 @05:54PM (#25547989)
    If you have to attach your name to a document about yourself, you're probably a lot less likely to lie (depending on who you are). It makes sense to me that they'd want a name, but I'd definitely feel a little funny having all that stuff about me on the webs.

    Then again, sites like peekyou [peekyou.com] already have way more information about me than I expected.
    • by Ghubi (1102775)
      Except in the cases where knowing the information will be published with your name on it makes you a lot more likely to lie.
    • by lazlo (15906)

      Actually, the real reason for attaching names is fairly obvious: In 100 years, when they reconstruct these people from their recorded genomes, it'll be nice to know what to call them. Well played.

  • That could be good or bad. I wouldn't keep getting spam about Male Enhancement, but they would pepper me for online gambling.
  • the issue is making a sacrifice for the betterment of humanity. 100% absolutely, you will recieve negative impediments in your life for participating in this project. losing your privacy is a tiny one. but you do it anyway, because you are happy to make the sacrifice for the betterment of all

    you don't make an important contribution to any cause, ideology, or project in this world without pain. if you make a contribution, and there is no pain, then it also isn't important

    those who contribute to this project will suffer embarassingly and perhaps romantically and financially for contributing. and god bless them for that. the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

    • Is attaching names to the data really so valuable to justify likely persecution of the participants, as well as introducing selection bias to the sample?

    • by TubeSteak (669689) on Tuesday October 28, 2008 @06:38PM (#25548451) Journal

      the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

      Deeper sacrifices... like the loss of privacy for your blood relatives?

      You aren't the only one with that DNA.
      Sharing it exposes more than just your genome.

      • You aren't the only one with that DNA. Sharing it exposes more than just your genome.

        Exactly - if you do happen to be carrying a recessive disease allele, your relatives immediately start to wonder if they carry it too...which isn't as bad as if you carry a dominant allele like the one for Huntington's. If they find this, then automatically one of your parents knows they have it (whether they wanted to find out or not) and your children know they have a 50% chance of getting this debilitating disease.

        I know people will say "better to know than not", but the fact remains that many people jus

    • by brit74 (831798)

      Rather than a little "no pain, no gain" argument that you do, I would suggest that organizers of the database find ways to protect the privacy of individuals contributing. It's not like making the subject's name public is terribly important or even useful. They want to connect the DNA to various attributes (diseases, etc), and adding a name isn't helpful in making those connections. So: hiding names would have no impact on the actual benefits of the study, and would maintain privacy. Yeah, I know that's

    • Re: (Score:3, Interesting)

      by khallow (566160)

      the issue is making a sacrifice for the betterment of humanity. 100% absolutely, you will recieve negative impediments in your life for participating in this project. losing your privacy is a tiny one. but you do it anyway, because you are happy to make the sacrifice for the betterment of all

      The issue is also one of privacy. Else most of the posts under this article wouldn't be discussing the privacy angle.

      you don't make an important contribution to any cause, ideology, or project in this world without pain. if you make a contribution, and there is no pain, then it also isn't important

      Typical sacrificial logic. Lot of things are worthwhile without pain. Lot things take effort and grit and aren't worth a whit. The sacrifice doesn't in itself make something worthwhile or not.

      those who contribute to this project will suffer embarassingly and perhaps romantically and financially for contributing. and god bless them for that. the consideration of their privacy is but the beginning of what the ywill sacrifice, so if loss of privacy gives you pause, this projec tis really not for you, because you haven't even begun to fathom the deeper sacrifices here

      But people such as yourself, who buy into the sacrificial logic, can somehow understand better what is really sacrificed? I don't buy it. My take is that the typical sacrificer (which you, cts may or may

    • by srothroc (733160)
      How does attaching your name and sacrificing your privacy affect your contribution to the world? It doesn't. They still have your personal history and genome. You could name yourself "Bruce Wayne" and the data would still be the data.

      How does it affect you? Immensely.
  • No Worries (Score:5, Funny)

    by ParanoiaBOTS (903635) on Tuesday October 28, 2008 @06:10PM (#25548175) Homepage
    I am protected by Lifelock, so my information can't be stolen [cnn.com] right?
  • Their names don't show up on the profile so the only one with clear privacy problems is the single black guy. He should have rethought this one.
  • What happens when we can artificially reconstruct an entire persons genome? All you'd have to do to frame a person is download that person's DNA, manufacture the chromosomes in copious quantities and leave it at the scene of the crime. Granted that kind of tech is probably 10 or 20 years out but it still seems worrisome.
    • by RDW (41497)

      If you have the genome sequence and know the markers that are likely to be tested, e.g. the FBI's CODIS Core STR Loci:

      http://www.cstl.nist.gov/strbase/fbicore.htm [nist.gov]

      then you could potentially engineer a fake sample (covering just the forensically targeted regions) using only existing technology...

  • Think open source (Score:5, Insightful)

    by chord.wav (599850) on Tuesday October 28, 2008 @06:56PM (#25548623) Journal

    Let's say you have a genetic "bug". Wouldn't it be better for human race if you share your code with everybody so anyone can peek at it, detect and correct genetic bugs?... Of course anyone can fork your "code"
      and create a new distribution of "you" but if you are smart and with an above-the-average IQ, wouldn't it benefit the human race also? Or do you prefer for these scientists to debug and make copies of dumber people that volunteered to it leaving you as "closed source" in the human market?

    And the final dilema...Should we clone Elvis?

    • by kre.86 (1213912)
      Let me know if the cloning of Elvis is gonna go ahead McDonald's Corp. (2550707) On Oct 28: 56.62 $ ^4.86 (9.39%)
  • by Trailer Trash (60756) on Tuesday October 28, 2008 @07:33PM (#25548975) Homepage

    I have psoriasis - I've already donated tissue to a research tissue bank for that. I have no problems at all putting my history and genetic code out there for any researchers - it can only benefit me and my descendants.

    Technically, it could also be used to create a clone army of me. But, we'd be pretty cool and probably not hurt anyone.

  • Hell i'm putting my name down, i'm in the UK so its very likely i'll never hear anything of it. Lets be honest, slashdotters are a pretty paranoid group, I feel pretty safe in the knowledge that nobodys going to dedicate thousands of pounds to trying to frame me for some international jewel thievery. Also the site says there are three levels of anonymity possible, full disclosure, disclosure to vetted groups, and disclosure only to their parent company and affilated labs.
  • every individual person shares 50% of its DNA with its father and 55% with its mother ( counting also mitochondrial DNA ) and percentages of 100% ( twins ) to sometimes 0% with siblings.

    other relatives also share DNA with every individual person!

    where these people asked by the contributors, if they are allowed to publish their genetic makeup? How is the legal situation?

    Can these relatives sue somebody who published his DNA?

    What about the DMCA?

  • A recent Nature article ran Watson's genome (3rd in world) against a 5000-gene disease database and found between 20 and 32 matches. Like one for retinitous pigmatosa. Yet none of these were expressed in his first 80 years of life. This shows how little we understand yet. Medical insurance companies should not jump the gun.

An age is called Dark not because the light fails to shine, but because people refuse to see it. -- James Michener, "Space"

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