The History of Genomics Program at the National Human Genome Research Institute (NHGRI), one of the twenty-seven Institutes comprising the National Institutes of Health, was created in 2012. It was intended to preserve the legacy of the Human Genome Project (HGP), the 13-year effort led by NHGRI to produce the first complete sequence of the human genome between 1990 and 2003.
I joined NHGRI in 2018 as the head archivist of the History of Genomics Program. I maintained a repository of roughly half a million pages of digitized documents, born-digital materials, and a wide variety of multi-media from the HGP. The History Program has since provided access to our digital archive to countless scholars, reporters, and members of the general public. For example, just last year we worked closely with a journalist at UnDark Magazine, a non-profit affiliated with MIT, to help them tell the story of one of the more complicated and controversial chapters from the Human Genome Project: the misleading of volunteers in Buffalo, NY who donated their DNA to participate in the HGP.1
Situated within the larger office of communications, the History of Genomics Program has also produced a wide variety of communications and educational materials including resources on the impacts of eugenics and scientific racism on genetics and genomics, and an extensive oral history initiative featuring interviews with some of the most important figures in contemporary biology.
Now, however, the History of Genomics Program is no more. In April, the Department of Health and Human Services announced a wide-scale Reduction in Force (RIF) which directly targeted offices across the NIH campus dealing with communications, policy, and education. The NHGRI Communications Office, and with it the History of Genomics Program, was completely disbanded on April 2nd. My contractual position was finally terminated on April 28th.
If you go to the NHGRI website, genome.gov, you will notice a banner across the top of the site that reads “Due to reduction in workforce efforts, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries. Note: Securing and protecting this website will continue.” In effect this means that the archive my colleagues and I have built and maintained since 2012 is inaccessible.
Recently, I learned that genome.gov has been relocated to a centralized NIH server. At the moment, I have no idea what this means for not only the archive but the educational materials I helped create, including a series of “virtual exhibits” which were collaborations with local high school student volunteers utilizing NHGRI’s unique historical records to tell interesting stories from the HGP. Ironically, as of writing this the genome.gov homepage has one of these exhibits, “GeneSweep”, currently displayed. For how much longer, I have no clue.
- Ashley Smart, “Haunting the Human Genome Project: A Question of Consent,” UnDark Magazine July 9 2024, https://undark.org/2024/07/09/informed-consent-human-genome-project/