A New Map?

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Understanding the Human Genome

• Implications for Public and Private Decision
  Makers

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A New Map?
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Curiosities, or a New World?
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The Near and the Far.
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A Treasure Map, or a Maze for Alice?
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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,

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How to ThinkPart II

• Chinese Boxes
• Epidemiology of Health
• The River

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BUT No 1 Context

• Values
• Opinions
• Beliefs
• Myths

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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
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BUT No 2 Bigger than Health?

• The Start of Life
• The Length of Life
• The Quality of Life.

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BUT No. 3 The Terrible Gift?

• From Sick to Better
• Angelina Jolies' Lips
• Who Owns Me?

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One reason for Why Now?

• Bad Cases Make Bad Law
• Two Different Kinds of Fire
• Why the Law is Conservative
• Research Horses and Barns

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Reverse Alchemy From Gold into Tin?
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• Forget about Health Insurance
• Generational Wars
• Profound Prevention

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A, C, T, G, or H, Y, P, E?

• Timelines
• What Does This Mean Implications

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• 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

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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.

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Additional Resources

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

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The Human Genome Project