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Evaluating Human Genetic Diversity (1997) / Chapter Skim
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6 ORGANIZATIONAL AND OTHER ISSUES
Pages 69-73

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From page 69...
... Equitable solutions to those problems clearly are central to the success of any international effort to define better the extent of human genetic variation, and they are essential if funding agencies such as the National Science Foundation and the National Institutes of Health are to consider properly the scientific merits and limitations of this research. It is also important that these agencies recognize the humanitarian concerns voiced by people who are alarmed by the ethical and social ramifications that they believe are inherent in the research.
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From page 70...
... Younger investigators in industrialized countries and those of whatever age in developing nations express the concern that any international research effort, such as the one contemplated, will be quickly captured by established groups in the developed nations or be captive to them from the outset. They are not reassured by the experience of the Human Genome Project as it is known to them, particularly with respect to their own nations or nations in which they have been trained.
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From page 71...
... However, it should be noted that support must be seen as extending over the long term, possibly decades, if the goal of establishing a resource for future use is to be achieved. We recognize that neither the National Science Foundation nor the National Institutes of Health is prepared or even able to fund a global survey like that contemplated, and we recommend that they seek advice on the role that they should play.
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From page 72...
... The funding agencies, specifically the National Science Foundation and the National Institutes of Health, should initiate such discussions through their international offices. These discussions will take time to bring to fruition; until a consensus is achieved, the US effort would be generating information of substantial moment relevant to the feasibility and urgency of an international study and would be identifying administrative barriers that would have to be surmounted.
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From page 73...
... The committee recommends that the National Institutes of Health or the National Science Foundation identify all such repositories, as well as the availability of the specimens to the scientific community in the US and elsewhere. We believe it to be inappropriate for us, as a committee, to intrude on the prerogatives of the funding agencies by suggesting a detailed mechanism for reviewing applications for support in this sphere of research.
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Key Terms

  • genetic variation
  • genetic variability
  • international effort
  • global survey
  • genome project

  • regional committees
  • international agencies
  • data repositories
  • international study
  • developing nations

  • tissue repositories
  • contemplated research
  • lipid research
  • research currently
  • agencies recognize

  • continued support
  • parallel activities
  • developed nations
  • atherosclerotic risks
  • richness exists

  • conscientious effort
  • quickly captured
  • active interaction
  • specific endeavor
  • transparent method

  • consider properly
  • permit active
  • solutions offered
  • identifying administrative
  • investigators sponsored


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