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Understanding the Human Genome:

Understanding the Human Genome:. Implications for Public and Private Decision Makers. A New Map?. Curiosities, or a New World?. The Near and the Far. A Treasure Map, or a Maze for Alice?. How to Think About Genetics & Health Care:. Nobel, Harvey, Galen, and Gore;

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Understanding the Human Genome:

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  1. Understanding the Human Genome: Implications for Public and Private Decision Makers

  2. A New Map?

  3. Curiosities, or a New World?

  4. The Near and the Far.

  5. A Treasure Map, or a Maze for Alice?

  6. How to Think About Genetics & Health Care: • Nobel, Harvey, Galen, and Gore; • Structure, Financing, Output: A "new" product? • Convergence: computers, biology, nanotechnology, and "paradigms“ • Yes, but,

  7. How to Think…Part II • Chinese Boxes; • Epidemiology of Health; • The River

  8. BUT No 1: Context • Values • Opinions • Beliefs • Myths

  9. Public Opinion on Genomics • 30% knew about the Human Genome Project; • 70% thought that the Genome Project was the most important science project they knew about; • 60% thought sequencing the Human Genome was more important than the Internet; • 40% thought that not only was GMO food a questionable idea, but that they wouldn't want to consume foods that had been genetically altered. * Presentation Robert DeSalle, Curator American Museum of Natural History, New York City. 2001

  10. BUT No 2: Bigger than Health? • The “Start” of Life; • The “Length” of Life; • The “Quality” of Life.

  11. BUT No. 3: The Terrible Gift? • From Sick to Better; • Angelina Jolies' Lips; • Who Owns Me?

  12. One reason for “Why Now?” • Bad Cases Make Bad Law • Two Different Kinds of Fire • Why the Law is Conservative • Research Horses and Barns

  13. Reverse Alchemy: From Gold into Tin?

  14. Forget about Health Insurance; • Generational Wars; • Profound Prevention

  15. A, C, T, G, or H, Y, P, E? • Timelines; • What Does This Mean; Implications

  16. “For twenty years geneticists have issued a stream of promises about what they will achieve. Few have been fulfilled, and some will never be. It has been said that the four letters of the genetic code are H, Y, P, and E, and medical providers must realize that the molecular biology business is as adept at promoting its wares as is any other.” • “There is an urgent need for public education in genetics. That might seem an odd statement in view of its extensive coverage in the media. No doubt, the information storm will continue, and much of what is published is of high quality, but, more than anything, the public needs fair assessments of what genetics can and cannot do.” • Jones, Steve. “Genetics in Medicine: Real Promises, Unreal Expectations”. Milbank Memorial Fund, June 2000

  17. The RWJ Project: • This workshop, conducted by Rick Carlson, is supported by a contract from the Robert Wood Johnson Foundation. • The research was provided by Josh Carlson, Director of Research for the Understanding the Human Genome Project.

  18. Additional Resources • DOE Human Genome Program Websitehttp://www.ornl.gov/hgmis • The National Human Genome Research Institute http://www.nhgri.nih.gov/ • PhRMA Genomics: A Global Resource http://genomics.phrma.org

  19. The Human Genome Project

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