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The Human Genome Project after a decade: policy issues

J Burris1, R Cook-Deegan, B Alberts

  • 1Marine Biological Laboratory, Woods Hole, Massachusetts 02543, USA. jburris@mbl.edu

Nature Genetics
|December 8, 1998
PubMed
Summary

Two key 1988 reports from the National Research Council and Office of Technology Assessment guided the Human Genome Project. These foundational documents established a research blueprint, though they underestimated private investment and rapid scientific progress.

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Area of Science:

  • Genomics
  • Bioinformatics
  • Molecular Biology

Background:

  • The Human Genome Project (HGP) commenced approximately ten years prior to the reports discussed.
  • Early momentum for the HGP was significantly influenced by two pivotal reports released in 1988.

Purpose of the Study:

  • To analyze the impact of foundational reports on the Human Genome Project's initiation and planning.
  • To evaluate the foresight of these reports regarding project scope, funding, and progress.

Main Methods:

  • Review of two key reports: National Research Council (NRC) report (February 1988) and Office of Technology Assessment (OTA) report (April 1988).
  • Analysis of the reports' influence on the joint plan by the National Institutes of Health (NIH) and Department of Energy (DOE).
  • Assessment of how the reports informed Congress regarding NIH and DOE roles in genomics.
Keywords:
Biomedical and Behavioral ResearchDepartment of EnergyGenetics and ReproductionHuman Genome ProjectNIH-DOE Working Group on Ethical, Legal, and Social Implications (ELSI)National Institutes of HealthNational Research CouncilOffice of Technology Assessment

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Main Results:

  • The NRC report endorsed the HGP, forming the basis for the NIH-DOE joint plan.
  • The OTA report provided Congress with tools to evaluate the roles of NIH and DOE.
  • Both reports underscored the significance of genomics and the necessity of a coordinated research effort.
  • The reports did not anticipate the substantial private funding or extensive patenting of genetic sequences.
  • The predicted rate of scientific progress was underestimated by the committees.

Conclusions:

  • The consensus-building efforts of the NRC and OTA committees were instrumental in establishing the HGP's foundational blueprint.
  • Despite underestimating private investment and the pace of discovery, the reports were crucial to the HGP's success.
  • The Human Genome Project stands as a major achievement in modern biological sciences, largely due to the strategic guidance provided by these early reports.