Kansas City Area Life Sciences Institute - keynote @ annual dinner

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  • 1. KCALSI Annual Dinner Keynote @wilbanks October 1, 2013
  • 2. 1. give me a place to stand, and a lever, and i shall move the world.
  • 3. every age has its own lever.
  • 4. ours is cheap data.
  • 5. cheap data changes how we justify our opinions.
  • 6. OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)
  • 7. 2. research data v. consumer data
  • 8. https://www.scienceexchange.com/
  • 9. 3. engaging a larger cohort (or, “crowdsourcing”).
  • 10. tension between anonymity and utility.
  • 11. “more like plutonium than gold”
  • 12. tension between expectation and reuse.
  • 13. our data isn’t worth much - on its own.
  • 14. $.50 to $2.50 for SSN, birthdate, etc.
  • 15. $5 to $15 for credit checks, health records
  • 16. the value is in the aggregate.
  • 17. 4. the current approach won’t cut it.
  • 18. 33
  • 19. 34
  • 20. 35
  • 21. 36
  • 22. assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  • 23. that’s the setup.
  • 24. sharing by small but coherent groups can create asymmetrically valuable resources.
  • 25. small group sharing
  • 26. proven to work in: software content
  • 27. let’s try a small but coherent group to share data and see if it works in science.
  • 28. Omberg,  et  al.  Nature  Gene*cs •Analysis of: 12 Tumor types, 6 molecular profiling platforms •Focus series of: 4 papers in Nature Genetics, with 14 more to follow in other NPG journals TCGA Pan-Cancer Consortium
  • 29. 68core projects
  • 30. 248researchers
  • 31. 28institutions
  • 32. 1070datasets
  • 33. 1723results
  • 34. 18papers in press
  • 35. let’s try a small but coherent group to share data and see if it works in health.
  • 36. “eat less and exercise”
  • 37. the experiment:
  • 38. volunteer must click to proceed all boxes must be checked
  • 39. http://opensnp.org/users/615
  • 40. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  • 41. “Also there is no suggestion of consanguinity in your pedigree.” http://www.ianlogan.co.uk/
  • 42. it’s likely that we will end up with a sharing monopoly of some sort.
  • 43. once entrenched, hard to move.
  • 44. instinct of institution: to increment.
  • 45. a. “just like now, but moreso”
  • 46. b. the cartel.
  • 47. c. an open system.
  • 48. 77
  • 49. “in the end, all data is either deleted or made public” - quinn norton
  • 50. shared data will be the fulcrum.
  • 51. thank you @wilbanks john.wilbanks@sagebase.org