Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Citizen Scientists by Amy Dockser Marcus

Discussion in 'Action Alerts and Advocacy' started by Bob, Dec 4, 2011.

  1. Bob

    Bob

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    Citizen Scientists by Amy Dockser Marcus.

    "Ordinary people are taking control of their health data, making their DNA public and running their own experiments. Their big question: Why should science be limited to professionals?"

    http://online.wsj.com/article/SB10001424052970204621904577014330551132036.html

    "Called "That's My Data!'' it aims to facilitate the flow of patients' detailed genetic data to researchers in exchange for open access to the results for those who contributed samples."


    "Mr. Wilbanks, who recently left Science Commons, created a standard consent document that will allow people to agree to let their genetic data be studied by anyone who is interestedas long as the investigator shares the results.

    The first project that will use the documents involves a group of patients with rheumatoid arthritis. Dr. Friend found a company willing to sequence the patients' entire genetic codes for free."



    It makes me think that maybe the ME community should think about taking control of our own science, research, data, genetic material and treatment results.
    Instead of donating money to various organisations, we could use our own money to place our DNA, and blood samples, in a central place where both we and researchers can access the material, results and data.
    Then we could use the resulting research data to investigate our own health.

    Anyway, that's the theory.

    According to the article, this is already happening with a group of patients and carers called "That's my Data!", but I haven't found them online yet.
     
  2. *GG*

    *GG* Senior Member

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    Interesting. I recently looked for Amy's info, wanted to follow here writing, have not heard anything in a while.

    GG
     
  3. Bob

    Bob

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