Mapping the Human Genome: Archival and Historical Questions

人类基因组计划被称为生物学的“曼哈顿计划”。与早期旨在制造原子弹的项目不同，人类基因组计划的目标是绘制控制人类遗传的“元素”。希望不是摧毁生命，而是解开疾病和生物学的基因途径的钥匙。但就像曼哈顿计划一样，人类基因组计划承诺将改变创造它的科学。它已经创造了新的信息工具和新方法，全国各地数百甚至数千名研究人员和技术人员正在使用这些工具和方法。与曼哈顿项目一样，这个项目也具有政治敏感性，并引发了深刻的伦理问题。但是，与1940年S的那个战时计划不同，人类基因组计划是在公众的密切关注和辩论中发展起来的。这项研究的目的是研究如何确保人类基因组计划的记录得到保存。现在和未来对基因组计划的所有理解--不仅是作为科学和技术，而且是作为一种政治努力、一种社会现象、一种经济冒险和一种伦理困境--将需要一种“记录的吸引力”。在这个项目的过程中，研究人员和档案保管员将评估全国几个主要实验室的文件需求和机会。他们的报告将由一个由档案学家、历史学家、哲学家、社会科学家和伦理学家组成的委员会审查。然后，它将分发给广大研究人员和联邦政府的政策制定者。这份报告不仅将提供保存文件的指导方针，还将展示该文件对于围绕基因组计划的当前和长期法律、社会和伦理问题的价值。

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.