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

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Portable Informed Consent

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