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Medicine Open Source News

Finding a Crowdsourced Cure For Brain Cancer 217

Hugh Pickens writes "Salvatore Iaconesi, a software engineer at La Sapienza University of Rome, writes that when he was recently diagnosed with brain cancer, his first idea was to seek other opinions. He immediately asked for his clinical records in digital format, converted the data into spreadsheets, databases, and metadata files, and published them on the web site called The Cure. 'The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures — and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.' The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of Iaconesi's tumor after surgery, and within one day Iaconesi heard from two different doctors who recommended similar kinds of 'awake surgery,' where the brain is monitored in real time as different parts are touched. A brain map is produced and used during a second surgery. 'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers. The active participation of everyone involved — both experts and ex-patients — is naturally filtering out any damaging suggestion which might be proposed,' writes Iaconesi. 'Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure. Or tell us, "I am here!" — alive and connected, ready to support a fellow human being.'"
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Finding a Crowdsourced Cure For Brain Cancer

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  • There were a ton of people interested in his case, but imo that was strongly dependent on the novelty and the fact that it's uncommon so far. Why did these geneticists and researchers spend a bunch of unpaid time on his case in particular? Because it was one of the few (only?) available in this form. But every year there are about 13 million people diagnosed with cancer. What if even 1% of them were uploaded online? Would there be folks like Jimmy Lin looking through all 130,000 of those cases on a volunteer basis? My guess would be no: once it gets to be a few hundred or thousand people trying the same thing, and then it just goes back to being normal medicine again, of the kind where you need doctors who're doing it as a full-time job to go through all the cases.

  • Support =/= Cure (Score:5, Insightful)

    by Anonymous Coward on Monday November 26, 2012 @09:08AM (#42093087)

    "Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure."

    Cancer does not work that way.

  • Misguided (Score:5, Insightful)

    by Captain_Chaos ( 103843 ) on Monday November 26, 2012 @09:14AM (#42093125)

    'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers.'

    This is incredibly misguided, and that is the most charitable way of putting it. Other things you could call it are bloody stupid, daft and irresponsible. There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input, most of it crap, and come up with any useful ideas, let a lone a "cure". Especially not if you're apparently going to accept most of the crap. Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...

  • by Half-pint HAL ( 718102 ) on Monday November 26, 2012 @09:32AM (#42093231)
    It's in part novelty, it's in part the cult of the individual. We've seen the internet pay for doctors bills, legal fees, new houses, breast implants etc for individuals, to the detriment of bigger charities that are far more efficient (and often more deserving) because people like an individual person with an individual story -- it's more personal. A genuine "cause" is far more abstract.
  • Re:Misguided (Score:4, Insightful)

    by Nerdfest ( 867930 ) on Monday November 26, 2012 @10:19AM (#42093477)

    When it comes to what works, the only thing I really trust is double-blind studies.

  • Re:Misguided (Score:4, Insightful)

    by bhartman34 ( 886109 ) on Monday November 26, 2012 @10:21AM (#42093493)
    Please don't tell me you're one of those "drug companies want people to have cancer" idiots.

    Read the following slowly, so that you'll understand it completely:

    Cancer isn't one thing. It's many things, under one umbrella term.

    Colon cancer isn't the same as lung cancer or skin cancer. There's no such thing as a "cure for cancer", and there never will be. There are treatments that can cure cancer for individual patients when it rears its ugly head, but there's no such thing as, "Wow! Look at this drug! No more cancer for anyone, ever!!".

    A 100% effective treatment for a specific cancer would be a multi-billion dollar a year drug, and would earn that revenue for years to come. (Yes, patents expire, but there are different routes of administration and different formulations to patent.)

    On the other side of the ledger, you have homeopathic "cures", that do absolutely nothing but drain people's wallets. Homeopathic drugs are nothing but really expensive water -- by design. You dilute some marginally useful ingredient many, many, many times over, and then sell people on magical bullshit.
  • by Samantha Wright ( 1324923 ) on Monday November 26, 2012 @11:20AM (#42093989) Homepage Journal

    Medical professionals do not place their job security above the well-being of their patients; those who do get destroyed for malpractice. I hear this claim getting repeated about pharmacologists a lot here on Slashdot—that they don't want to cure diseases because palliative care is a better cash cow—and it just reflects immensely on how ignorant people become when they reduce everything to money.

    Doctors are primarily concerned with helping people. With few, anomalous exceptions, they want to eliminate disease and make the world a better place. There are plenty of ways to get a secure job that don't involve making a lifelong commitment to interacting with sick people (and for surgeons, the insides of sick people) on a regular if not daily basis. They also don't cost several extra years, nor the tens if not hundreds of thousands of dollars involved in tuition. You've clearly gotten them confused with IT managers.

    Furthermore, the few doctors who don't consider patient welfare to be their major drive are preoccupied with personal glory, which they already obtain through saving lives. Nothing could be better for them than saving lives even after they're dead. Curing a disease and inventing something that improves the quality or process of medical care both accomplish this.

"If you lived today as if it were your last, you'd buy up a box of rockets and fire them all off, wouldn't you?" -- Garrison Keillor