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World's Largest Medical Experiment 135

Posted by Zonk from the half-a-million-volunteers dept.
eldavojohn writes "Recently in the UK, a Biobank project has been rolled out to 'unpick' the genetic basis of diseases such as cancer on half a million volunteers. This is based on the success of a three-month pilot phase conducted on 3,800 participants. From the article: 'Over the next four years, blood and urine samples will be collected from volunteers aged 40 to 69, to help scientists unravel the genetic foundations of common diseases, including cancer, heart disease, diabetes, dementia and joint problems. If you live in the UK, agreeing to this survey may involve a little more than you would expect."
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World's Largest Medical Experiment More

World's Largest Medical Experiment

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  • What they really need to get this rolling...... (Score:3, Funny)

    by Anonymous Coward on Tuesday August 22, 2006 @01:40PM (#15957307)
    Is a couple of scantilly clad nurses. Then they can collect DNA too.

  • DeCODE (Score:5, Informative)

    by tom8658 ( 899280 ) <tomd AT uky DOT edu> on Tuesday August 22, 2006 @01:44PM (#15957340)
    Theres a project like this in Iceland called DeCODE [bioteach.ubc.ca]. They've been given a lot of power over the data collected, enough to make some people wary. It's a fair assumption that this project will face similar problems, although the measures governing DeCODE seem to protect the company much more than the individual. It will be interesting to see how Biobank handles this.

  • Sounds like a good idea... (Score:5, Insightful)

    by Bender0x7D1 ( 536254 ) on Tuesday August 22, 2006 @01:48PM (#15957371)
    If...

    they properly inform people about the program and its uses before having them volunteer.

    they are rigorous in protecting privacy. (No AOL fiasco.)

    they closely monitor different companies are doing with the data - no cross-referencing with their own data to identify people, no reselling of the data, etc.

    they allow patients to "opt-out" even after they have volunteered.

    they provide it for free to interested, responsible paries. (Or at least cheap enough that major pharmaceutical companies aren't the only customers.)

    they follow the ethical standards of the profession, and not the ethical standards of the mighty dollar (or pound).

    • Only a problem (Score:2, Informative)

      by krell ( 896769 )
      "they properly inform people about the program and its uses before having them volunteer."

      Only for a problem that, when confronted by someone demanding blood / semen /urine samples, always decide to give first and ask questions later.

      • Re: (Score:3, Informative)

        by ConsumerOfMany ( 942944 )
        I don't know how it is in Europe, but for us (NY metro research facility) to even gather blood samples for randomized testing (say to establish a reference range for cholesterol) the amount of paperwork we go through for each donor is quite extensive. There is about a 10 page disclosure that we go through page by page, have them initial each point about what we are going to do with the sample, what there rights are about the storage of the sample, how long we keep it, who will see the data etc. After they s
        • "Mind you, many people that respond to the ads for medical research studies aren't the most educated folks, or even care about what we do with the sample as long as they get the 15 bucks, But we try our best to inform them"

          Just place a classified advert in Craiglist or the Cleveland Picayune or some other paper, saying "WANTED: FINGERS. WE REMOVE. YOU PAY $16"....and don't be surprised if you get a few customers.
        • and note that before we can even be the one to sit down with a subject and go over the consent form, we need to "certified" by the IRB [irbservices.com] (institutional review board research ethics)
    • The idea is good, but seemingly there is a problem in the design of the study. It would have been better if a longer study was planned, by first collecting data of relatively younger individuals (20-30), and then for the same individuals when they reach the bracket of 40-69. This would enable to distinguish between an individual's innate genetic tendency and an acquired genetic tendency (through mutation triggered by x-ray exposure e.g)

  • What? (Score:5, Insightful)

    by imidan ( 559239 ) on Tuesday August 22, 2006 @01:49PM (#15957383)
    If you live in the UK, agreeing to this survey may involve a little more than you would expect.
    After reading TFA, I am still puzzled about this statement. What does it mean? The article doesn't even imply this vague disclaimer. Would the submitter care to enlighten us on how the survey involves more than we would expect?
    • After reading TFA, I am still puzzled about this statement. What does it mean?
      I'm going to go out on a limb and guess that the implication is that the government is likely to try to use your DNA against you sometime in the future.
      • More importantly, all of the people who are in the UK that take part of this survey who don't live there won't have their DNA in the goverments database.
      • I'll do you one better. Bear with me.

        How many of us here played "Wing Commander IV: The Price of Freedom?" Okay, lots of us.

        I can tell you right now that it is not outside the realm of possibility to engineer viruses that kill people who don't meet a certain genetic template. More to the point, if you have a gene for X, it kills you or sterilizes you. "Gene X" could be anything from skin color to blood type to a gene predisposing you to breast cancer or familial hyperlipidemia.

        • I can tell you right now that it is not outside the realm of possibility to engineer viruses that kill people who don't meet a certain genetic template. More to the point, if you have a gene for X, it kills you or sterilizes you. "Gene X" could be anything from skin color to blood type to a gene predisposing you to breast cancer or familial hyperlipidemia.

          This is certainly a frightening prospect. But the most frightening is a killer virus targeting skin color or other racial phenotype. The problem with do

          • Say white supremacists create a gene that kills black people. They'll find they're killing a few of their own (how rich an irony that would be)! Because we're simply too genetically related to target "race" that specifically.
            Too true. And don't forget that viruses are really good at mutating. What targets one race today may target another tomorrow. Hopefully nobody is stupid enough to use genetic-trait-targeted viruses against their "enemies".

    • Re: (Score:2, Informative)

      by dr-suess-fan ( 210327 )

      If I'm not mistaken, the original comment looked to me like a rather obvious reference to the the eroding freedoms and big-brothering going on in the UK as of late

    • Re:What? (Score:5, Funny)

      by Dhalka226 ( 559740 ) on Tuesday August 22, 2006 @02:31PM (#15957707)
      Would the submitter care to enlighten us on how the survey involves more than we would expect?

      NO! Then you would expect it!!!

    • Re: (Score:3, Interesting)

      by beavis88 ( 25983 )
      Here's the participant info:

      http://www.ukbiobank.ac.uk/about/participantinform ation.php [ukbiobank.ac.uk]

      The only clause that raised a flag in my mind was the long-term access to medical records, even in the event you die or become mentally incompetent. Other than that, the terms seem downright sane for such a potentially Orwellian study.

  • The actual relevant website URL (Score:3, Informative)

    by wherrera ( 235520 ) * on Tuesday August 22, 2006 @01:52PM (#15957400) Journal
    Here's the link: Biobank (UK) http://www.ukbiobank.ac.uk/ [ukbiobank.ac.uk]

  • Of course, the volunteers won't make a penny (Score:1, Insightful)

    by Anonymous Coward
    The problem with this is that all the volunteers won't see a penny, but the medical institutions that come up with a medical breakthrough as a result of the data obtained from the volunteers will make billions. They will patent the cure, market it and the volunteers get nothing.

    In the best sense, surely any profitable outcome that arises out of data provided by these volunteers should be subject to some sort of profit sharing? Afterall, without the volunteers, it may not be possible for these pharmaceutical

    • Follow through. (Score:5, Insightful)

      by posterlogo ( 943853 ) on Tuesday August 22, 2006 @02:33PM (#15957718)
      Volunteers in medical studies often (nearly ALWAYS) recieve medical advice and consultation, possibly free medication, and follow-through care. It sounds like you do not want to volunteer -- please don't. Some people, however, feel that participating in a worthy endeavor is payment enough. If it leads to improved health care, great. If you are concerned about pharma companies making money, go into politics. These issues do not belong in science.

    • Re: (Score:2, Insightful)

      by eipgam ( 945201 )
      I get your point, but since when has profit sharing or payment been a pre-requisite for volunteering?

      What I'd rather see happen is the NHS get subsidised drugs that are developed as a result of this study.

    • Re: (Score:2)

      by Surt ( 22457 )
      The volunteers won't get anything except better medical care (while in programs like this, superior health monitoring is a necessity, so if nothing else you get checked out by competent doctors on a regular basis).

      They also get the benefit of cures down the road, and the satisfaction of helping others even if a cure for their particular disease doesn't come out of the study.

      There's also a strong aversion in the medical community to coercive measures being used to get people involved in medical studies. Pay
    • Believe it or not, I prefer that they do not make a cash payment to volunteers in medical experiments. The reason is that by paying out money to do this, you're encouraging the poor to participate more than the rich. I suppose in this case the treatment is not very invasive so it's ok. But, just recently, I read about the Chinese study of HIV. They are paying Chinese citizens $300 to participate. Now, who do you think would take them up on this offer? The poor. It just sort of gives me the image of the guy

      • Re: (Score:3, Insightful)

        by geekoid ( 135745 )
        statistically the rich won't participate at all, no matter what.

    • Re:Of course, the volunteers won't make a penny (Score:4, Interesting)

      by Mister Whirly ( 964219 ) on Tuesday August 22, 2006 @05:03PM (#15958799) Homepage
      Curing diseases isn't profitable. Treating symptoms with very expensive drugs is.
      Depending on who the research group really is - if they are a pharm corporation they are in no way funded to find a "cure" for anything - but if they are truly independent they may be looking to cure something....

      I work with a ton of medical researchers at the university where I work, and many of the research volunteers are doing it just for the sake of science. Yes, it is surprising, but there still are some folks out there motivated by other things than greed. As the earlier poster pointed out, they are compensated for travel time, given free medical treatment and/or drugs, etc. Some even get compensated for their time...

    • Re: (Score:2)

      by x2A ( 858210 )
      "The problem with this is that all the volunteers won't see a penny"

      That's why they're called volunteers!! "without pay" is part of the definition. Therefore, if they did see a penny, they wouldn't be volunteers!

  • The largest experiment that we know about... (Score:5, Funny)

    by BigZaphod ( 12942 ) on Tuesday August 22, 2006 @01:52PM (#15957410) Homepage
    What about all the fluoride in the water? It's a conspiracy... a secret experiment that's been conducted for a generation. Who knows what effects that has on us? It might be turning us all into communist spies. Perhaps we'll all wake up one day under the influence of a massive KGB mind control beam. Anything could happen! We must protect our precious bodily fluids at all costs!

    • Re: (Score:1)

      by kfg ( 145172 ) *
      What about all the fluoride in the water? It's a conspiracy... Perhaps we'll all wake up one day under the influence of a massive KGB mind control beam.

      Don't worry, it's only transmitted through cell phones.

      KFG

    • Re:The largest experiment that we know about... (Score:4, Interesting)

      by Lumpy ( 12016 ) on Tuesday August 22, 2006 @02:05PM (#15957500) Homepage
      Oh get a grip. we KNOW what flouride ion in the water does to you there are craploads of medical documents rolling all the way back ot the 1900's on it.

      BTW, My city was used as the control for the origional flouride treatments in the early 1900's Only retarted morons are afraid of the Flouride in water. It's health benefits are only rivaled by clorinating water in making people live longer.

      Flouride ions in water consumed by children make a drastic and dramatic change in the reduction of caries and decay in teeth, increasing the health of the general population significantly. Adults get no benefit from the ion and only huge doses like you find in toothpaste actually affect adult teeth.

      BTW, way before you get poisoned by Flouride your theeth will mottle. I.E. turn brown from the excess flouride... ask many well water drinters from the southwest about flouride in the water, they have too much in many places from natural ground water.

      • ...ask many well water drinters from the southwest about flouride in the water, they have too much in many places from natural ground water.

        Side effects also include an unusual mental disorder, whose primary symptom involves an insatiable desire to mount large falling bombs while wearing a cowboy hat, whooping and hollering all the way to ground zero.

      • Re: (Score:2, Funny)

        by bdonalds ( 989355 )
        Please watch this movie [imdb.com]. We will all be better for it.

      • Re: (Score:1)

        by everett ( 154868 )
        I can attest to this being from Franklin City, VA. You could always tell the natives (people that had grown up drinking the water there) by the brown stains on their teeth.

        Although it could have something to do with the paper mill there too. Who knows.
      • You mean you have not seen Dr Strangelove yet?
      • BTW, My city was used as the control for the origional flouride treatments in the early 1900's Only retarted morons are afraid of the Flouride in water.

        I've always thought a resistance to floridation was unfounded, but my two brothers and I grew up in a town without it and none of us has ever had a single cavity. A few of my friends I grew up with also didn't have any. Certainly we weren't a cavity free town, but how does this compare to places with Floridation? Do no kids there get cavities?

        Our hometown ac
    • That's why I only drink rainwater and pure grain alcohol...

    • Re: (Score:1)

      by mmdog ( 34909 )
      You're only half-right. Flouride in the water is a requirement for the space based mind control lasers to work. Why do you think there is a debate over tin foil vs. aluminum foil as the best way to protect yourself?

      Don't believe me? Then you're clearly wearing the wrong type of protection.
  • ...was the introduction of the Big Mac.

    • That's only a small part of the experiment. There are varying amounts of unpronounceable ingredients in lots of other things, too.

      My guess is the experiment is to eventually get us to the point that embalming is no longer necessary. Morticians and coroners have already noticed that people now take longer to decay when they die and the speculation is that all of the preservatives and antibiotics in our food is the cause.

      Cheers,
      Dave

    • Re: (Score:2)

      by smchris ( 464899 )
      Succinct. But I believe there are already a lot of longitudinal health studies that demonstrate the role of environmental factors and personal choices on "cancer, heart disease, diabetes, dementia and joint problems". What good do those do Big Pharma? They are looking for things that respond to drugs. And that isn't a bad thing even if the greatest good for the greatest number might be realized by life change and public health actions.

      The issue of volunteer compensation is interesting. Before the era o
      • "1. Air America Radio. If the plumbers and coffee shops that advertise on our local affiliate (in a major metro market) are any indication, the big media money isn't in criticizing the Bush regime. So they solicit money from individuals who want a free-as-in-open-source media even though the contributors aren't given a financial stake in the station's success."

        How does this stack up to the $875,000 in taxpayer grants Air America received in funds diverted from the Gloria Wise Boys & Girls Club charit
  • ...blood and urine samples will be collected from volunteers...

    Just go down to any chav-infested town centre on a Friday or Saturday night. Plenty of blood and urine around then...

  • The longer we spend trying to find what is wrong with US, as opposed to what is wrong with the crap we eat, drink and breathe is the biggest killer of all. Somehow though, doctors are oblivious to the fact that the only animals that get cancer, heart disease, diabetes etc are us, and our domesticated pets (and livestock, etc). And so they don't find it unusual that the most sucessful primate in the world has more built-in flaws than a pre-alpha build of Windows. Hang on a second!!! Doesn't evolution sel

    • Re: None more wrong than you (Score:1, Insightful)

      by Anonymous Coward

      Somehow though, doctors are oblivious to the fact that the only animals that get cancer, heart disease, diabetes etc are us, and our domesticated pets (and livestock, etc).

      Umm, No that is completely and totally incorrect. However "We and our Pets" are the only ones DIAGNOSED and TREATED for any of these conditions. The wild animals that suffer from these problems all DIE and are EATEN by predators or scavengers.

      Why is it that some people will believe the MOST RIDICULOUS things without doing a single bit of

    • Re: (Score:2, Insightful)

      by plague3106 ( 71849 )
      Your post is so full of crap. Wild animals get cancer as well. I can only hope you're kidding, and the mods are just high as usual.

    • Re: (Score:2)

      by MBCook ( 132727 )

      I don't know, I think this is a good thing. If people want to kill themselves let them. There are already tons of people working on diet and anti-cholesterol drugs and such to "help" those people.

      But what if you eat well and such? Something like this could be very important. You may think you are eating healthy, but what if you could take a test and find out that your diet needed more of X because that would reduce your risk of Y which is high because of genes A, B, and C?

      Also, don't forget that it's easi

    • Mcdonalds makes its McRibs from ground up meth addicts. Am I the only one that thinks there is something wrong with that?
    • And so they don't find it unusual that the most sucessful primate in the world has more built-in flaws than a pre-alpha build of Windows. Hang on a second!!! Doesn't evolution select the MOST fit? Yes, nature does seek the most fit, but unlike every other species of animal on the planet, we live beyond our typical reproductive lives. This longevity takes us into the realm of where genetic mutations causing cancer have their biggest effects and also the things you mentioned, such as heart disease.
  • Of course, if you live anywhere other than the UK, you'll find it involves far more than you'd expect.
  • more should be done to use the web to collect trial information. It costs 1/10th of a traditional trial; eventually the possibilty exists to create a new wellness mgmt system as we are doing on the brain, strictly voluntary, but providing tools allowing people to follow themselves over time - does it work? a few thousand people since 8/18 on this one. [cognitivelabs.com] with a clear opt-out.

  • Just a pity that they don't follow the subjects for a longer period of time. Although one can certainly learn a lot by tracking people for 4 years, I wonder if it is long enough for certain diseases which are, sadly enough, far too common.

    As a comparison:

    The University Medical Center Groningen has initiated a large scientific study called LifeLines, which, will follow the developments in the health of as many as 165,000 people in the northern Netherlands during a period of at least 30 years. The LifeLi

  • Largest CONTROLLED medical experiment (Score:3, Interesting)

    by davidwr ( 791652 ) on Tuesday August 22, 2006 @03:20PM (#15958025) Homepage Journal
    Don't forget the unintentional "experiments" that tested things like:

    Will the thinning of the ozone layer result in more cancer?
    Will increased pollution cause health problems?
    Will increasing the average air temperature over time have health consequences?
    Will advertising cigarettes on television lead to more lung cancer?
    Will not promoting condoms lead to an increase in HIV transmission?

    and many more.

    Yes, I know, technically those aren't "medical experiments" but we still have an opportunity to learn from them.
  • I thought the world's largest medical experiment was the Drug War, including the alcohol and tobacco businesses. Nearly a total success, too, lasting well over a half millennium.
  • The world's largest medical experiment is aspartame [holisticmed.com] and MSG [truthinlabeling.org], and it's being conducted by food manufacturers and multinational conglomerates with the FDA's blessing.

    And you and I are the guinea pigs.

  • Excuse me, but am the only person who noticed that this "experiment" has no control population, no experimental population, no placebos, etc...

    I believe what we have here is a medical study on the longitudinal form...they have been run before (I recall one at Harvard which tracked 40,000 men for several decades, if memory serves me right) with quite large populations.

    Let's get our terminology right...

    Yours,

    Jordan

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