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

Cold Spring Harbor Laboratory, Cold Spg Hbr NY

Investigators

Abstract

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.