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Consent to research

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Project document and wireframe for the Consent to Research project at http://del-fi.org/consent

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Consent to research

  1. 1. consent to research<br />designed by:<br /> john wilbanks<br />sponsored by:<br />Sage Bionetworks<br />Kauffman Foundation<br />Lybba<br />pro bono counsel provided by:<br />danvorhaus<br />
  2. 2. traditional<br />study<br />institution<br />“normal” home of research study<br />- university<br />- medical center<br />
  3. 3. novel<br />institutions<br />emerging home of research study<br />- may invest at university<br />- may invest in novel studies (including mobile, company, ???)<br />traditional<br />study<br />institution<br />“normal” home of research study<br />- university<br />- medical center<br />
  4. 4. novel<br />institutions<br /><ul><li>forming nodes, but not networks
  5. 5. unlikely to achieve integration</li></ul>traditional<br />study<br />institution<br />
  6. 6. novel<br />institutions<br />novel<br />institutions<br />traditional<br />study<br />institution<br />novel<br />institutions<br />novel<br />institutions<br />traditional<br />study<br />institution<br />traditional<br />study<br />institution<br />novel<br />institutions<br />traditional<br />study<br />institution<br />traditional<br />study<br />institution<br />traditional<br />study<br />institution<br />traditional<br />study<br />institution<br />
  7. 7. privacy <br />aggregator<br /><ul><li>privacy intermediaries to facilitate private access
  8. 8. empower granular access to private information
  9. 9. focused on HIPAA sensitive data</li></ul>privacy<br />marketplace<br />
  10. 10. what‘s missing?<br />public access to information needed to build models of disease<br />the role of research in the system - of individuals who want their data used to generate new knowledge<br />
  11. 11. what do we propose to build?<br />standards that allow for open and extensible communication across all four classes of entities.<br />the creation of “public genomic records” that are individual, but not identified<br />consent systems and user interfaces that allow those public genomic records to move from place to place<br />
  12. 12. what do we propose to build?<br />standards that allow for open and extensible communication across all four classes of entities.<br />the creation of “public genomic records” that are individual, but not identified<br />consent systems and user interfaces that allow those public genomic records to move from place to place<br />Sage Bionetworks<br />
  13. 13. what do we propose to build?<br />standards that allow for open and extensible communication across all four classes of entities.<br />the creation of “public genomic records” that are individual, but not identified.<br />consent systems and user interfaces that allow those public genomic records to move from place to place<br />Consent to Research<br />
  14. 14. “approve once, research many times”<br />
  15. 15.
  16. 16. sage bionetworks “public genomic records”<br />“static” genomic<br />data<br />full genome sequence<br />genome variation (i.e. 23andme)<br />
  17. 17. sage bionetworks “public genomic records”<br />“dynamic” genomic<br />data<br />DNA expression<br />RNA expression<br />methylation<br />“the new new machine”<br />
  18. 18. sage bionetworks “public genomic records”<br />“observational”<br />data<br />phenotypic <br />disease response<br />“ambient” data (smartphones etc)<br />
  19. 19. sage bionetworks “public genomic records”<br />“static” genomic<br />data<br />“dynamic” genomic<br />data<br />“observational”<br />data<br />
  20. 20. sage bionetworks “public genomic records”<br />requires “informed consent” to share.<br />“static” genomic<br />data<br />“dynamic” genomic<br />data<br />“observational”<br />data<br />
  21. 21. old school consent<br />
  22. 22.
  23. 23.
  24. 24.
  25. 25. new school consent<br />
  26. 26. new school consent<br />(has a real legal tool underneath)<br />
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  34. 34. coming in 2012.<br />
  35. 35. want to learn more?<br />follow @wilbanks<br />follow @sagebio<br />http://del-fi.org/consent<br />http://sagebase.org/commons<br />

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