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 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.

Public Health Relevance

The Human Genome Project (HGP) was a 13-year research project carried out in more than 20 laboratories around the world, including labs located in the U.S., UK, Japan, Germany, France, and China. The goal of the HGP was to discover all 20,000 to 25,000 human genes, determine the sequence of the 3 billion DNA subunits contained in the human chromosomes or genome, and make this information available for further study. The HGP has contributed to improving human health by enabling a better understanding of the molecular basis of various diseases. A study released in 2011 by Battelle shows that the HGP also had extensive economic impacts. Because it was such a large project, distributed over labs in six countries, and because it spanned the time before and after widespread use of the World Wide Web (1990-2003), the HGP presents a challenging topic for scholarly research. In this project, Cold Spring Harbor Laboratory (CSHL), one of the labs that participated in the HGP, will prepare an annotated scholarly guide to the HGP. The tentative title is: Human Genome Project Documentary History: An Annotated Scholarly Guide to the HGP. Our goal 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 to 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 be built in an e-book/PDF format, and will feature links to collections of original documents and other primary sources related to the history of the HGP. It also will be produced in print format. It will cover all known collections of original materials, books, and chapters related to the HGP. Materials will include manuscripts;letters and email messages;audio and video oral history interviews;materials pertaining to public policy;grant applications;news items;scientific records, data, and lab notebooks;and government documents. The guide 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. This guide will cover U.S. collections and publications only. In the future, we plan to expand it to include international sources, working together with collaborators in the UK, France, and China. In addition to serving as a standalone work, the guide will be included (in digest form) as an appendix to a book on the history of the HGP to be published by CSHL Press. The preparation of this book is currently in progress. 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.

Agency
National Institute of Health (NIH)
Institute
National Library of Medicine (NLM)
Type
Health Sciences Publication Support Awards (NLM) (G13)
Project #
1G13LM011890-01
Application #
8625547
Study Section
Special Emphasis Panel (ZLM1-ZH-P (01))
Program Officer
Vanbiervliet, Alan
Project Start
2014-02-01
Project End
2016-01-31
Budget Start
2014-02-01
Budget End
2015-01-31
Support Year
1
Fiscal Year
2014
Total Cost
$44,685
Indirect Cost
Name
Cold Spring Harbor Laboratory
Department
Type
DUNS #
065968786
City
Cold Spring Harbor
State
NY
Country
United States
Zip Code
11724