Mapping the Human Genome: Archival and Historical Questions

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The Human Genome Project has been called the "Manhattan Project" of biology. Unlike the earlier project which aimed at creating an atomic bomb, the Human Genome Project aims at mapping the "elements" that control human heredity. The hope is not to destroy life, but to unlock the key to genetic approaches to disease and biology. But like the Manhattan Project, the Human Genome Project promises to transform the science that created it. Already it has created new informational tools and new methods which are being used by hundreds if not thousands of researchers and technicians across the country. Like the Manhattan Project as well, this project is politically sensitive and raises deep ethical questions. But, unlike that wartime project of the 1940's, the Human Genome Project has developed in the full glare of public scrutiny and debate. It is the goal of this study to examine ways to insure that the record of the Human Genome Project is preserved. All present and future understanding of the genome project--not only as science and technology, but also as a political endeavor, a social phenomenon, an economic venture and an ethical quandary--will require an "appeal to the record." During the course of this project, researchers and archivists will assess documentation needs and opportunities in several of the major laboratories across the country. Their report will be vetted by a committee of archivists, historians, philosophers, social scientists, and ethicists. It will then be issued to researchers at large and policy makers in the federal government. This report will provide not only a guideline for preservation of documents, but a demonstration of the value of this documentation for immediate and long-term legal, social and ethical issues surrounding the genome project.