Human Genome Project Documentary History: An Annotated Scholarly Guide to the HGP

描述(由申请人提供)： 冷泉港实验室(CSHL)正在寻求国家医学图书馆(NLM)的支持，以准备一份带注释的国际人类基因组计划(HGP)学术指南。暂定的标题是：人类基因组计划纪录片历史：HGP的注释学术指南。这本指南将对生物医学研究人员、医学和生命科学历史学家以及生物伦理学家和公共卫生官员有价值。 这个想法来自于2012年5月在冷泉港实验室(CSHL)举行的关于人类基因组计划历史的国际会议。参与者包括科学家、行政人员、作家、出版商、电影制作人、历史学家和资助者。在那次会议上，科学家们就人类基因组计划的不同方面进行了介绍，随后的讨论集中在如何最好地向不同受众展示人类基因组计划的历史。 这本带注释的学术指南的目的是为学者提供一种工具，可以作为研究HGP历史的起点。该指南也将是关于人类基因组计划的展览的有用补充，例如由国家地球物理研究所和史密森学会创建的联合展览，该展览将于2013年开幕，以庆祝人类基因组计划完成10周年(见http://www.genome.gov/Smithsonian/). 该指南将涵盖美国所有已知的与HGP相关的原始材料、书籍和章节的收藏。它将包含对每个资源的描述，包括联系和访问信息，以及有关资源的持有量和主题强度的信息。在收集不完全集中于HGP的情况下，我们将提供有关收集的哪些部分与HGP相关及其原因的信息。带注释的学术指南将提供原始文献集、口述历史访谈和其他与HGP历史有关的主要来源的链接。因此，它将是对将由CSHL出版社出版的国际HGP参与者的一本新的散文集的补充。这本散文集的编辑将担任这本带注释的学术指南的编辑委员会成员。 我们调查了现有的关于HGP的学术研究，确定了229所拥有与HGP相关的藏品的机构。这些机构包括公司、美国政府机构、研究机构、大学、委员会/委员会、资助机构、协会、国际政府机构、医院、律师事务所和研究联盟。我们还确定了与HGP相关的50项主要发现和技术。 我们目前正在收集有关HGP起源和发展的原始材料、书籍和章节的信息。国家人类基因组研究所(NHGRI)2012年聘请的一名档案保管员同时收集了NIH的藏品信息。 除了这项研究，我们计划调查资深基因组研究人员，以确定他们认为关于HGP历史的哪些方面是重要的，以及正在培训的基因组研究人员应该知道什么。我们还将采访当代科学和技术历史学家，找出他们认为关于HGP历史的重要内容，以及他们对记录HGP的不同原始材料潜在研究价值的看法。 带注释的HGP学术指南将以电子书/PDF格式构建，并将以音频、视频和文档文件的链接为特色，这些文件有助于说明文本中提出的想法和原则。它还将以印刷形式制作。该项目包括研究和制作电子书/PDF格式的指南，为期两年，从2013年12月1日到2015年11月30日。

DESCRIPTION (provided by applicant): Cold Spring Harbor Laboratory (CSHL) is seeking support from the National Library of Medicine (NLM) to prepare an annotated scholarly guide to the international Human Genome Project (HGP). The tentative title is: Human Genome Project Documentary History: An Annotated Scholarly Guide to the HGP. This guide will be of value to biomedical researchers and historians of medicine and the life sciences, as well as bioethicists and public health officials. This idea came out of an international meeting on the history of the Human Genome Project held in May 2012 at Cold Spring Harbor Laboratory (CSHL). Participants included scientists, administrators, authors, publishers, filmmakers, historians, and funders. At that meeting, scientists gave presentations on different aspects of the HGP, and the discussion that followed centered on how to best present the history of the HGP to different audiences. The goal of the annotated scholarly guide is to provide scholars with a tool that may be used as a starting point for research on the history of the HGP. The guide will also be a useful addition t exhibitions about the HGP, such as the joint exhibition created by the NHGRI and Smithsonian Institution, which will be opening in 2013 to celebrate the 10-year anniversary of the completion of the HGP (see http://www.genome.gov/Smithsonian/). The guide will cover all known U.S. collections of original materials, books, and chapters related to the HGP. It will contain a description of each resource, including contact and access information, as well as information about holdings and subject strengths of the resource. In cases where a collection is not completely focused on the HGP, we will provide information about which parts of the collection are relevant to the HGP and why. The annotated scholarly guide will provide links to collections of original documents, oral history interviews, and other primary sources related to the history of the HGP. As such, it will be complementary to a new book of essays by participants of the international HGP that will be published CSHL Press. The editors of this book of essays will serve as members of the editing committee for the annotated scholarly guide. We have surveyed existing scholarship about the HGP and have identified 229 institutions that have collections related to the HGP. These include companies, U.S. government agencies, research institutes, universities, committees/commissions, funding agencies, associations, international government agencies, hospitals, law firms, and research consortia. We also have identified 50 major discoveries and technologies that are associated with the HGP. We are now in the process of collecting information about collections of original materials, books, and chapters relating to the origins and development of the HGP. Information about collections at the NIH is simultaneously being collected by an archivist hired in 2012 by the National Human Genome Research Institute (NHGRI). In addition to this research, we plan to survey senior genome researchers to determine what they think is important about the history of the HGP, and what genome researchers-in-training should know. We also will interview historians of contemporary science and technology to find out what they think is important about the history of the HGP, as well as their views about the potential research value of different original materials documenting the HGP. The annotated scholarly guide to the HGP will be built in an e-book/PDF format, and will feature links to audio, video, and document files that help illustrate the ideas and principles put forth i the text. It also will be produced in print format. The project, which includes researching and producing the guide in e- book/PDF format, will be carried out over a two-year period, December 1, 2013 to November 30, 2015.