John Wilbanks: Let’s pool our medical data

John Wilbanks: Let’s pool our medical data

76 Comments

  • Mohammuk Bin Tutuk says:

    Let's share the knowledge.. medical or technology

  • Joseph K says:

    If an cloud based database was open to the world, I bet we'd find a ton of patterns we didn't previously consider through statistical analysis.

    This would open up and focus medical research in a way we previously couldn't imagine.

    There doesn't have to be any names attached to the data (because that is irrelevant), and it doesn't have to be a matter of force (thus informed consent).

    I would gladly sign over my data to this, the potential benefits greatly outweigh any privacy concerns.

  • Andrew says:

    Good talk, openness is key to the spreading on information. But you can still be anonymous which means you don't have to be naked.

  • extracrapthatispubli says:

    So where do I submit my information?

  • HigherPlanes says:

    Americans get sick because they eat at McDonalds

  • dichroic101 says:

    Here's the thing… it's not all about YOU. The world doesn't revolve around YOU or people like you. Not everyone believes "there is no reason for dignity in life", I certainly don't. If you want to go and take a crap, naked, in the middle of your bf's wedding go right ahead. However, there are differences between humans & animals. The ability to reason is one, common sense and dignity are another.
    My life. My choice. Not everyone is willing to be indoctrinated into believing everything we hear

  • TheAllSeeingWheel says:

    he looks like Matthew Perry and Paul Dano love child ^^

  • HigherPlanes says:

    The speaker is so nieve. We should all be proud that we have form of consent as a society? And this he utters while we're all guine pigs in the face of the FDA becuase they refuse to lable GMO foods. What joke.

  • Nada Ashour says:

    excellent

  • HigherPlanes says:

    What separates us from the animals is not common sense. If you look around you at the feverish hell on earth that we humans created, there is very little common sense there. What separates us from the animals is that we are able to ask why. But the animals are happier than we are. Go figure.

  • thegyger says:

    Why the hell did anyone vote this down?

  • vincent Tang says:

    haha !! i do agree !!!

  • arkoraa says:

    And how do you know that other animals are "happier" than us?

  • Lobos222 says:

    Maybe because the speaker seemingly said;

    [Yellow fever part]
    !Paraphrasing communicated meaning!

    "Its great to use desperate people and kill them in the process for medical research as long as you have a peace of paper saying they okayed it and thats the difference between us and the Nazis…"

    In other words not a great way to communicate the pros of consent. Self servitude agreements are not allowed. Nether is self sacrifice via medical research,with some exceptions for terminal ill people.

  • Nicholas Stillman says:

    Just wondering, how much does it cost to get your genome?

  • Lobos222 says:

    Actually if you where functional sick. Meaning you had some kind of disease that made you overall functional in society and able to work, but that info being public meant no one would risk hiring you. I would argue YOU WOULD CARE.

    Privacy is a issue in many situations. Specially places where national or social healthcare isnt a right. Why would a company give you insurance for example if it was pretty probably you would be a cost rather than profit…

  • Lobos222 says:

    I find this speakers intentions good, but naive to some realities in this world.
    No one has issues with combined research until money or individual identifying information is a subject. Which many times there is…

    This dilemma isnt just about research for terminal illnesses.

  • AlderDragon says:

    Open source medicine? I like it.

  • HigherPlanes says:

    Ignorant bliss. If you don't count the millions of animals that suffer from direct human abuse, animals in nature, for the most part, can co-exist in balance with nature and each other and they don't kill one another over petty differences.

  • T Y says:

    very nice talk.

  • thegyger says:

    If you honestly think he's advocating using desperate people you both misunderstood the purpose of the talk and might have a dangerously low opinion of the human race or paranoid so that everyone is automatically suspect. He said that people are allowed to volunteer for science but there are laws against doing anything dangerous on humans unless the researcher does it to themselves.

    The speaker was advocating for shared information about previous health records, not for more human research.

  • Vaughn Pinpin says:

    You should contact them and tell them. Pretty sure a lot of people will want to participate, but waiting for it won't help.

  • Pierre Aupeix says:

    00:15

  • 52111centrumcz says:

    Are you frigging insane? You've never seen cats torture birds and mice for play? Dogs ripping out the guts of cats for the fuck of it? Boars eating small fawns they cornered and essentially chewed their legs off alive? You have no frigging idea how short, cruel and painful life is for many animals in the wild.

  • HigherPlanes says:

    Don't be ignorant, animals don't kill each other over petty differences. God you're stupid

  • HigherPlanes says:

    It's animal instinct. It's not calculated human cruelty. That's the big difference.

  • 52111centrumcz says:

    I am sure that makes a world of a difference to the dying animals to know that…. oh wait….I think it doesn't!

    Look at actual problems of the world, such as waste of resources for crap (like moving a single asshole on a 747 across the US so he can get his ass re-elected), the supression of fuel efficient designs due to patents which slows and makes more expensive their proliferation -or even just medical patents which keep medicines prohibitively expensive for most of the world population

  • bob bobby says:

    Back the fuck up. Who said anything about taking shits in the middle of wedding ceremonies? Nobody.
    They're saying that we all need to be willing to make small personal sacrifices in order to further our knowledge of the world and make it better for future generations.
    Your capricious lashing-out is incredibly hypocritical – "It's not about YOU… … My life. My choice" – and is exactly what needs to change in terms of global mindset. We're all human, folks. We should be in it together.

  • HigherPlanes says:

    Well yes, I agree that we have actual problems in the world, all human created problems like your example points out. Which brings me back to my original point that there is little common sense in the human world. That's the point I was trying to make in the first place. So you agree that the animals are happier than we are?

  • JamesTanm says:

    Harm, hucksters and hoodwinks? Holy halliteration, hatman!

  • ne0teric says:

    Sheep. It's not the lack of sharing that's causing the increase in all these cancers etc.

    Reminds me of facebook… when everyone is oblivious and willing to just "share" every aspect of their life, why bother getting court approval ect. to spy on them?… no need.

    Yeah, go help the drug companies et al. find more efficient ways of killing you… great idea.

    And if you people really think all sharing is a good thing… share some of your money with me. (yeah, that's what I thought)

  • mindlesstube says:

    Any one have link to the global site?

  • Terraqueous says:

    People! You should still check!

  • dreaminginnoother says:

    I just can't over people actually volunteering in that yellow fever study…

  • rRobert Smith says:

    another way for you employer to screen you out of a future job…think again

  • tonykee says:

    So where is the link, so i can share something?

  • Dennis Tudor says:

    I believe that transparency breeds honesty. I have been living with schizophrenia for 2/3rds of my life. Your idea(s) is a great one. The reasons you gave to help your cause were great as well and I agree with those. However, my caution goes up because monitoring this kind of information will give those that have power the ability to eradicate the 90% in a way we will never see coming. The first to fall will be civil liberties, then civil rights, and finally, freedom.

  • Dennis Tudor says:

    he said "naked in a group can be beautiful"

  • 2Beornot2Be5 says:

    Gee yeah!! My insurance company will probably adjust my rate if I send my med info. Sorry dude can't trust the system. Wish the system was trustworthy.

  • YouHolli says:

    I am 37 and I never got sick. Not even a flu.

  • Dreamsenshi says:

    What *is* that link? In case it's working later? Thanks.

  • Dreamsenshi says:

    There's one website for the Creative Commons here: wiki . creativecommons . org / Main_Page and John Wilbanks's Twitter name is wilbanks . Tweeted to him to ask for missing links specific to this TedTalk. We'll see if he answers.

  • Hugo G says:

    Gives us your genome!

  • renegaed says:

    here's the secret. there's more in trying to fix cancer than fixing it.

  • Luther Sloan says:

    I look forward to opting in so medical companies can take my DNA and copyright everything they find in it. So if perhaps in someones genes they have the cure for cancer. Not anymore, Big Pharma owns that.

  • Christie Nel says:

    Yes! We need to share more data! Imagine how many times the same thing gets coded over and over! But also, if I have valuable data to give, I don't know who to give it to, because nobody wants it. Tell us who to give it to!

  • Dreamsenshi says:

    I got a tweet back from Mr. Wilbanks. The website is weconsent (dot) us.

  • Ritvars Dortāns says:

    This is so insanely cool!

  • Steve Lane says:

    What a good man.

  • AceionzHardstyle says:

    Most people have no other option but to sit tight and wait for scientists to find answers. I'm one of those people. I hope they come up with virtual immortality soon…

  • blue says:

    I tried the link today, and it's not broken anymore. Maybe you can try again. 🙂 I would love to help but I'm too young.

  • twistedf4te says:

    Without even seeing this video I can say this: We can pool ALL of our data; it's called the fucking internet. What's in our way? It's simple. The monetary system. Why do you NEED money? Think about it. And then look up "Resource Based Economies"

  • 52111centrumcz says:

    Because they are stupid, and so are happier when they have eaten and are in a den – then of course they are happier. Much like a downs syndrome human – they are some of the cheeriest people you could meet.

  • TheaDragonSpirit says:

    If I do this though then people can do experiments on me… like radiation tests and chemical sprays. And track peoples results.

  • TheaDragonSpirit says:

    How does it help in any way for this stuff to be public?

  • Seth Wright says:

    where is his site? there's no link..

  • mekore says:

    it would like a huge pile of result with unknown method=pile of shit

  • wevenhuis says:

    I agree that open is not necessarily unpaid.

  • Lance Winslow says:

    I completely concur with this concept.

  • Hugo Campos says:

    Another great talk by Wilbanks. "How can we be 'patient' when the system is broken?" I love that!

  • TomSLinkon says:

    How can a person sleep through a great talk like this? 12:19 near the bottom

  • Khyrid says:

    If only his medical data was open source maybe we could find out.

  • mutatron says:

    Drinking game: take a swig whenever a sentence starts with "So", or you hear "Right" or "Alright" as a kind of punctuation.

  • R-Squared Comicz says:

    One of the most forward-thinking ideas I've heard in a while. This has the potential to help a lot of people.

  • Dingo says:

    I hope I see the day when politics and bureaucracy won't hinder the works of people like John or Aubrey de Grey.

  • GreatG0dOm says:

    It's the fear of insurance companies not covering illness in US that is a major reason folks don't want to put DNA information out in public. Maybe can get data from countries that have universal healthcare? Or make the data anonymous to an individual. Electronic health records are in the works, which will make easier to gather data.

  • bob smashu says:

    man u r really bring me down

  • Brian Jensen says:

    are his eye's purple?

  • Oliver Stieber says:

    what you want is proper record from people who go to street dr's, e.g. I was telling my shrink I was using katamine for depression every two weeks 2 years before the research came out. and the reserch happened not becuse of people like me directly reporting but because of people being treated for physical pain seemed to be cured of their depression, which at first they put down to lack of pain.

  • Rex Hunter says:

    Why is Kevin Rudd wearing a wig?

  • Sam Browne says:

    This is literally everything wrong with TED in one video. The fact that John Wilbanks didn't even care enough not to ruin the usability of his liver numbers by having a stupid wine party the night before a test hammers home how damned stupid you'd be to rely on medical data volunteered by the general public at random.

  • Ashton Tacey says:

    I think it's a great idea to pool clinical studies to find different patterns and possibly even new treatments or prevention tools. However, not everyone would be comfortable with sharing some of their medical information. This plan has a lot of ethical dilemmas. It would diminish the HIPPA laws and if not everyone is on board with this notion then what good will it do?

    If we did create a healthcare without privacy laws and all medical records were able to be accessed, then wouldn't this be going against our morals? Everyone has a right to their own privacy and has a right to share information when they want.

    I'm quite conflicted as to what I would choose if I had the opportunity. Sacrifice privacy or further research? This topic should definitely be discussed and looked at further as we continue to progress in the medical field.

  • Ohad Gefen says:

    A very important talk… not shared enough, ironicly

  • Alto's Music Lab says:

    we share infor with the DOC, who hoards it for himself; while the capitalistic model is to hide the answer and sell it to others, and while marijuana cures chronic poisoning when you quit taking the poison, I quit oxy and therefore marijuana is a cure. Go listen to big Liars[pharma] tell you i'm not cured when I am. It's a huge marketing message which works fine, I'm perfectly healthy and you won't even consider how I did it. hmmn? We need to share what they're calling 'anecdotal' is reality, weed cures alzheimer and prevents cancer. I'm 60 now and none of my pot smoke friends ever had cancer, all the others do.

  • Alto's Music Lab says:

    i'm 60 none of my pot smoke friends have cancer, all the others do

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