NHGRI makes history of genomics special collections available to the public
Archives include trove of historical materials from the Human Genome Project.
The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), has created a new publicly available digital archive and search aid for accessing documents related to the history of genomics.
The first available collections contain documents of former NHGRI director and current NHGRI senior investigator Francis Collins, M.D., Ph.D., former NHGRI deputy director Elke Jordan, Ph.D., and the NHGRI Media Collection, which contains a wide variety of audio and visual materials from the Human Genome Project and beyond.
“Due to our unique history, NHGRI has one of the most significant collections of materials on the Human Genome Project and on the evolution of the field of genomics," said senior historian Christopher R. Donohue, Ph.D., co-lead of the NHGRI History of Genomics Program. “These informative historical documents reveal details about the early days of the Human Genome Project, providing insights about the development of this revolutionary science."
Since 2012, the NHGRI History of Genomics Program has been organizing an archive of more than 1 million pages of digital documents, 400 videos and 100 other physical items, such as CDs, VHS tapes and posters. Previously, only a curated subset of about 3,000 items from this archive were available to a select group of scholars and researchers. Now, the archive is open to anyone.
Due to our unique history, NHGRI has one of the most significant collections of materials on the Human Genome Project and on the evolution of the field of genomics. These informative historical documents reveal details about the early days of the Human Genome Project, providing insights about the development of this revolutionary science.
The new publicly available archive is keyword-searchable, allowing scholars, students and others to explore the breadth of NHGRI’s archival holdings. This resource provides full digital access to some of the most significant historical artifacts from the Human Genome Project and other major genomics efforts.
“Among these items are handwritten notes and minutes from key meetings and video recordings of events that shaped not only the course of the Human Genome Project but genomics and scientific research writ large,” said Zach Utz, M.A., NHGRI archivist. “This new resource streamlines the process of requesting additional files from the archive and standardizes the citation of those files.”
As part of the NHGRI History of Genomics Program’s 10th anniversary celebration in October 2022, Utz began to transition archival materials via the open-source, user-friendly, browser-based application called ArchivesSpace, which is used by many of the largest archival repositories around the world, including similarly focused institutions like Cold Spring Harbor Laboratory Archives and MIT Special Collections.
“The NHGRI History of Genomics Program’s archival materials represent such a unique and important historical asset. It’s very exciting that we are finally able to provide broader access to these important materials that capture the metamorphosis of the field of genomics” said Eric Green, M.D., Ph.D., NHGRI Director.
The Francis Collins Collection alone contains digitized files from nearly 100 boxes of documents, totaling approximately 200,000 pages of paper materials created or preserved during his tenure as NHGRI director from 1993 to 2008. “We recognized the revolutionary importance of the Human Genome Project and how critical its associated documentation would be to historians, journalists and the general public wanting to know more about the development of genomics and the vital role played by NIH . We worked hard to record the key moments and decisions related to this amazing example of team science,” Dr. Collins notes. “As I passed the baton to Eric Green, I was delighted to see the implementation of robust efforts to capture and organize the invaluable materials that we had collected!”, said Dr. Collins.
Shortly after Eric Green, M.D., Ph.D., succeeded Dr. Collins as NHGRI director, he recruited Dr. Donohue and established the NHGRI History of Genomics Program. This ignited the process of digitizing and preserving the files and other materials that now make up this unprecedented archival resource, of which the Francis Collins Collection is the largest.
Since Dr. Collins remained NHGRI director for five years after the completion of the Human Genome Project in 2003, his full collection also includes numerous assets from other NHGRI-led landmark projects, such as the International Haplotype Map (HapMap) Project, 1000 Genomes, Human Heredity and Health in Africa (H3Africa), and the Electronic Medical Records and Genomics (eMERGE) Network, among others.
Some highlights from this new public collection include plans for data sharing from the 1996 and 1997 Human Genome Project Bermuda meetings; Dr. Collins’ handwritten notes for President Bill Clinton to announce the completion of the first draft human genome sequence; files related to the establishment and operation of the Ethical, Legal, and Social Implications (ELSI) Research Program; and video footage of early genomics technologies and the laboratories that participated in the Human Genome Project.
Dr. Jordan’s collection contains digitized materials from nearly 30 boxes of documents from her time at NHGRI, including when she served as Deputy Director from 1988-2002. As one of the earliest staff members and leaders of the institute, her collection spans almost the entirety of the Human Genome Project, including before there was even a genomics-focused institute at NIH. She led the project through changes in directorship before the arrival of Dr. Collins.
Dr. Jordan played an especially important role in the establishment of the Ethical, Legal, and Social Implications (ELSI) Research Program, one of the important and enduring legacies of the Human Genome Project. Her collection includes key documents from the project, including minutes and agendas from the first Program Advisory Committee and ELSI meetings, correspondence and memoranda establishing the National Center for Human Genome Research as a formal center (and later an institute) within NIH, and documents related to Congressional oversight and funding of the Human Genome Project.
“The Human Genome Project is a scientific endeavor of great historical importance,” Dr. Jordan wrote in an archived 1992 memo to staff, urging them to preserve official documents. “Consequently, many of our files and records may someday be required to document the history of the project.”
"It’s great that the public is going to be able to get greater access to these invaluable materials through this new resource,” Dr. Jordan added.
Increasing access to the history of genomics and the Human Genome Project
The opening of this new resource coincides with other recent efforts at NHGRI to make the institutes archival collections more accessible to the public.
In 2022, the NHGRI History of Genomics Program hosted a lecture with computational biologist and engineer Luis Amaral, Ph.D., and his doctoral student, Spencer Hong, from Northwestern University. Dr. Amaral and Hong detailed their groundbreaking work using machine learning technologies with NHGRI’s archival database to automate difficult processes, such as redacting sensitive information from historical documents.
The publicly available portion of the resource will continue to grow as the History of Genomics Program staff incorporate other cutting-edge technologies and historically important documents from former NHGRI staff. Future collections will include, but not limited to, documents from senior leaders of NHGRI’s Extramural Research Program, including Mark Guyer, Ph.D., Jane Peterson, Ph.D., and Jeff Schloss, Ph.D.
Last updated: November 2, 2023