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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"

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Data sharing as a means to a revolution

  1. 1. data sharing as a means to a revolution.<br />john wilbanks<br />creative commons<br />@wilbanks<br />
  2. 2. revolution.<br />
  3. 3. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.<br />
  4. 4.
  5. 5.
  6. 6. @ $20 per article$10, 940<br />(we’re not in the center)<br />
  7. 7.
  8. 8.
  9. 9. watch the content industries for clues?<br />
  10. 10.
  11. 11. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.<br />
  12. 12.
  13. 13.
  14. 14. “unanticipated contributions from unexpected sources”<br />
  15. 15. open monopoly…<br />
  16. 16. open monopoly…<br />
  17. 17. open…<br />
  18. 18. 1. put patients in the center.2. choose open monopolies.3. resist the resistance.<br />
  19. 19.
  20. 20.
  21. 21. resisting the resistance is an emergent property of networked people.<br />(or, at least, some of us. and that’s enough.)<br />
  22. 22. if we share with each other, that’s enough. and it’s much harder to stop us from doing it.<br />
  23. 23. Browser Window<br />Freedoms you are granting<br />Right to do research with your data<br />Right to redistributeyour data<br />Right to publish results of research from your data<br />Right to commercialize products derived from research on your data<br />✓<br />✓<br />✓<br />✓<br />
  24. 24. Browser Window<br />Obligations you are imposing<br />I don’t want to be re-identified<br />Only health research allowed.<br />✓<br />✓<br />
  25. 25. Browser Window<br />Warning<br />Check to confirm that:<br />I understand the risks<br />I consent that my data can be used for research.<br />Although I can withdraw at any time, versions of my data that are already distributed may not be retrievable.<br />You must click yes on each element to proceed.<br />✓<br />✓<br />✓<br />
  26. 26. grant me back my data.<br />
  27. 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?<br />
  28. 28.
  29. 29. revolution.<br />
  30. 30. the best time to plant <br />a tree is 20 years ago.<br />
  31. 31. the second best time <br />is now.<br />

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