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Portable Informed Consent

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Slides from the NCI DCLG meeting March 18 2013. Agenda at http://advocacy.cancer.gov/files/DCLG_Meeting_62_Public_Agenda.pdf

Slides from the NCI DCLG meeting March 18 2013. Agenda at http://advocacy.cancer.gov/files/DCLG_Meeting_62_Public_Agenda.pdf

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  • 1. 1. sharing by small but coherent groups cancreate asymmetrically valuable resources.
  • 2. small group sharing
  • 3. coherentism from: standard legal toolscommon infrastructure norms metadata
  • 4. (doesn’t exist for personal health data)
  • 5. http://opensnp.org/users/615
  • 6. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  • 7. “Also there is no suggestion ofconsanguinity in your pedigree.”http://www.ianlogan.co.uk/
  • 8. 2.the experiment:
  • 9. let’s build a small but coherent group toshare data and see if it works in health.
  • 10. PLC:“portable” legal consent
  • 11. terms in blue pop up definitions
  • 12. all boxes must be checked volunteer must click to proceed
  • 13. volunteer cannot skip video
  • 14. 21
  • 15. 22
  • 16. 23
  • 17. 24
  • 18. 3.success will not magically increase thanks to data.
  • 19. 26
  • 20. assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  • 21. thank you @wilbanksjohn.wilbanks@sagebase.org

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