Data sharing as a means to a revolution

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my slides from the 25th Genetic Alliance annual meeting in DC. "Data sharing as a means to a revolution"

my slides from the 25th Genetic Alliance annual meeting in DC. "Data sharing as a means to a revolution"

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  • “if you wrap the Internet around every person on the planet and spin the planet, software flows in the network. It's an emergent property of connected human minds that they create things for one another…”- Moglen’sMetapohorical Corollary to Faraday’s LawMoglen’s laws hold true not just for software, but for all sorts of creative works.If you tie that desire to create and share to the explosion in the technology to capture, publish, and distribute works that we saw in the late 1990s…Text (blogs), photos, videos, audio.And on top of that, they’ll start creating with other people’s stuff, and distributing those new works as well.But there are real-world constraints in the law, often embedded in technology, that can make this sort of creative innovation illegal.“ the resistance of the network is directly proportional to the field strength of the IPR system…”- Moglen’sMetapohorical Corollary to Ohm’s Law
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  • 1. data sharing as a means to a revolution.
    john wilbanks
    creative commons
    @wilbanks
  • 2. revolution.
  • 3. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.
  • 4.
  • 5.
  • 6. @ $20 per article$10, 940
    (we’re not in the center)
  • 7.
  • 8.
  • 9. watch the content industries for clues?
  • 10.
  • 11. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.
  • 12.
  • 13.
  • 14. “unanticipated contributions from unexpected sources”
  • 15. open monopoly…
  • 16. open monopoly…
  • 17. open…
  • 18. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.
  • 19.
  • 20.
  • 21. resisting the resistance is an emergent property of networked people.
    (or, at least, some of us. and that’s enough.)
  • 22. if we share with each other, that’s enough. and it’s much harder to stop us from doing it.
  • 23. Browser Window
    Freedoms you are granting
    Right to do research with your data
    Right to redistributeyour data
    Right to publish results of research from your data
    Right to commercialize products derived from research on your data




  • 24. Browser Window
    Obligations you are imposing
    I don’t want to be re-identified
    Only health research allowed.


  • 25. Browser Window
    Warning
    Check to confirm that:
    I understand the risks
    I consent that my data can be used for research.
    Although I can withdraw at any time, versions of my data that are already distributed may not be retrievable.
    You must click yes on each element to proceed.



  • 26. grant me back my data.
  • 27. hard questions.1. what will you do to get informed about consent?2. how far will you go to get access to your own data?3. how engaged will you be to demand sharing by researchers?
  • 28.
  • 29. revolution.
  • 30. the best time to plant
    a tree is 20 years ago.
  • 31. the second best time
    is now.