Open Science Meets Personalized Health<br />David Ewing Duncan<br />Director, Center for Life Science Policy, UC Berkeley<...
Two Great Movements<br />Citizen patients<br />Citizen scientists<br />
Historical Moment<br />
People<br />+ Technology<br />= Empowerment<br />
“With great power comes great responsibility...”- Ben Parker (Spiderman’s Uncle)<br />
Why DIY?<br /><ul><li>Curiosity
Feel it coming: early adopters
Outmoded paradigms
Tired of hearing no
Bad customer service
Change the world</li></li></ul><li>THEEXPERIMENTAL <br />MAN PROJECT  <br />
Age of Personalized Health<br />
<ul><li>10 million genetic markers
9,366 genotypes
 320 environmental toxins
 22 hours of MRI brain scans
 ~ 2 liters of blood
 ~ $150,000</li></ul>The Experiment<br />
Healthy<br />
Not Just Genes...<br />Environment<br /> Brain<br />Body<br />
Experimental Family<br />Alzheimer’s (rs4420638)<br />Father		    Mother<br />   AG			AA<br />David		    Brother<br />  AA...
Favorite Genetic Marker<br />CYP1A2<br />Caffeine Fast Metabolizer<br />
Mercury and Me<br />
Mercury andMe<br />
Mercury and Me<br />Halibut (lunch)  Swordfish (dinner)<br />
Mercury Before: 4 ppb<br />Mercury After: 13 ppb<br />
My genetic sensitivity to mercury(Envirogenomics)<br />
High Anxiety<br />
Fear and Anxiety <br />Emotional incongruence (emotional conflict)<br />Emotional conflict resolution<br />(emotion regula...
(Don’t) Be Still My Beating Heart<br />
First Add Genomics<br />Copyright 2008 Entelos, Inc.<br />
Biomarkers (Chemistry)<br />Copyright 2008 Entelos, Inc.<br />
Scans: Ultrasound and CT<br />Copyright 2008 Entelos, Inc.<br />
Genes + Environment +<br />Biomarkers + Ultrasound + CT Scan <br />Entelos Project<br />Combine Risk Factors <br />
Prediction of my future… ?<br />Copyright 2008 Entelos, Inc.<br />
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David ewing duncan open science 7-30-10

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David ewing duncan open science 7-30-10

  1. 1. Open Science Meets Personalized Health<br />David Ewing Duncan<br />Director, Center for Life Science Policy, UC Berkeley<br />
  2. 2. Two Great Movements<br />Citizen patients<br />Citizen scientists<br />
  3. 3. Historical Moment<br />
  4. 4. People<br />+ Technology<br />= Empowerment<br />
  5. 5. “With great power comes great responsibility...”- Ben Parker (Spiderman’s Uncle)<br />
  6. 6. Why DIY?<br /><ul><li>Curiosity
  7. 7. Feel it coming: early adopters
  8. 8. Outmoded paradigms
  9. 9. Tired of hearing no
  10. 10. Bad customer service
  11. 11. Change the world</li></li></ul><li>THEEXPERIMENTAL <br />MAN PROJECT <br />
  12. 12. Age of Personalized Health<br />
  13. 13. <ul><li>10 million genetic markers
  14. 14. 9,366 genotypes
  15. 15. 320 environmental toxins
  16. 16. 22 hours of MRI brain scans
  17. 17. ~ 2 liters of blood
  18. 18. ~ $150,000</li></ul>The Experiment<br />
  19. 19. Healthy<br />
  20. 20. Not Just Genes...<br />Environment<br /> Brain<br />Body<br />
  21. 21. Experimental Family<br />Alzheimer’s (rs4420638)<br />Father Mother<br /> AG AA<br />David Brother<br /> AA AG<br /> Daughter <br /> AA<br />Heart Attack (rs1075728) <br />Father Mother <br />AG AG<br />David Brother <br />GGAA<br /> Daughter <br /> AG<br />
  22. 22. Favorite Genetic Marker<br />CYP1A2<br />Caffeine Fast Metabolizer<br />
  23. 23. Mercury and Me<br />
  24. 24. Mercury andMe<br />
  25. 25. Mercury and Me<br />Halibut (lunch) Swordfish (dinner)<br />
  26. 26. Mercury Before: 4 ppb<br />Mercury After: 13 ppb<br />
  27. 27. My genetic sensitivity to mercury(Envirogenomics)<br />
  28. 28. High Anxiety<br />
  29. 29. Fear and Anxiety <br />Emotional incongruence (emotional conflict)<br />Emotional conflict resolution<br />(emotion regulation)<br />
  30. 30. (Don’t) Be Still My Beating Heart<br />
  31. 31. First Add Genomics<br />Copyright 2008 Entelos, Inc.<br />
  32. 32. Biomarkers (Chemistry)<br />Copyright 2008 Entelos, Inc.<br />
  33. 33. Scans: Ultrasound and CT<br />Copyright 2008 Entelos, Inc.<br />
  34. 34. Genes + Environment +<br />Biomarkers + Ultrasound + CT Scan <br />Entelos Project<br />Combine Risk Factors <br />
  35. 35. Prediction of my future… ?<br />Copyright 2008 Entelos, Inc.<br />
  36. 36. Lost 10 pounds<br />
  37. 37. Still work to be done<br /><ul><li>Science needs validating
  38. 38. Skeptical public
  39. 39. Resistance from traditional medicine
  40. 40. Expensive
  41. 41. Shift from old to new</li></li></ul><li>Orwellian Possibilities<br /><ul><li>Big Brother
  42. 42. The Obama Effect
  43. 43. Discrimination
  44. 44. Genetic thrallism (Gattaca)
  45. 45. Unleashing monsters
  46. 46. Fear</li></li></ul><li>Personalized Health Project<br /><ul><li>Coordinated effort to validate
  47. 47. Integration is key
  48. 48. Get creative with law, policy, education, ethics, media
  49. 49. Private sector and early adopters
  50. 50. Encourage (demand?) a paradigm shift</li></li></ul><li>Thoughts on DIY <br /><ul><li>Dangers need to be taken seriously (credo of Ben Parker)
  51. 51. Be proactive with government and law enforcement
  52. 52. Work with Big Science – they need you, you need them
  53. 53. Do something wonderful </li></li></ul><li>Coming this fall…<br />The Linkage Project:<br />A Manifesto<br />
  54. 54. Still going… more tests <br />
  55. 55.
  56. 56. www.ExperimentalMan.com<br />
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