{"id":3842,"date":"2025-06-25T16:34:20","date_gmt":"2025-06-25T15:34:20","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/openaccess\/?p=3842"},"modified":"2025-06-25T16:35:15","modified_gmt":"2025-06-25T15:35:15","slug":"vanishing-acts-us-research-data-at-risk-and-how-to-save-them","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/openaccess\/2025\/06\/25\/vanishing-acts-us-research-data-at-risk-and-how-to-save-them\/","title":{"rendered":"Vanishing Acts: US research data at risk (and how to save them!)"},"content":{"rendered":"
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This post was written by Camille Regnault, Senior Scholarly Communications Assistant in the Research Data Management team<\/a>.<\/span><\/i><\/p>\n

Overview:<\/span><\/b>\u00a0<\/span><\/h2>\n

Earlier this year, several reports raised concerns about National Institutes of Health (NIH)-funded data repositories\u2014critical to research and public health\u2014being flagged for potential ‘review,’ prompting widespread unease within the scientific community.<\/span>\u00a0<\/span><\/p>\n

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These reports have emerged against a backdrop of <\/span>sweeping grant terminations<\/span><\/a> and cuts to research considered to be related to DEI programs, following Presidential Executive Orders in the US and a regime change under the NIH.<\/span>\u00a0<\/span><\/p>\n

The NIH is the largest funder of biomedical research in the world and one of eleven divisions that fall under the US Department of Health and Human Services, making important discoveries that improve health and save lives. It is a key provider of resources such as PubMed and PubMed Central (PMC), for medical and health research as well as ClinicalTrials.gov, for clinical trial data.<\/span>\u00a0<\/span><\/p>\n

The NIH is also Imperials\u2019 most <\/span>commonly applied to US Federal Funding agency<\/span><\/a> and the university holds many awards both as the Lead and as a Partner.<\/span>\u00a0<\/span><\/p>\n

In the wake of these major shakeups however, it has additionally become clear that access to a variety of federally-created and federally-hosted datasets has been limited or removed while access to others remains potentially at risk.<\/span>\u00a0<\/span><\/p>\n

Data rescue efforts and stakeholder responses:<\/span><\/b>\u00a0<\/span><\/h2>\n

In February 2025, the <\/span>Data Rescue project<\/span><\/b><\/a> emerged as the result of a coordinated effort between three data organisations, including members of <\/span>IASSIST<\/span><\/a>, <\/span>RDAP<\/span><\/a>, and the <\/span>Data Curation Network<\/span><\/a>, to attempt to safeguard threatened research data.<\/span>\u00a0<\/span><\/p>\n

Their stated goal is \u2018to serve as a clearinghouse for data rescue-related efforts and data access points for public US governmental data that are currently at risk\u2019 and their efforts include ‘data gathering, data curation and cleaning, data cataloging, and providing sustained access and distribution of data assets\u2019. You can read about their current efforts,\u00a0 <\/span>here<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n

In the same month, the <\/span>Harvard Law School Library Innovation Lab<\/span><\/b> Team released the <\/span>data.gov <\/span><\/b>archive on Source Cooperative. The 16TB collection is available to access at <\/span>https:\/\/source.coop\/repositories\/harvard-lil\/gov-data\/description<\/span><\/a> and includes over 311,000 datasets harvested during 2024 and 2025. This is being updated on a daily basis as new datasets are added to data.gov.\u00a0<\/span>\u00a0<\/span><\/p>\n

In the UK members of the <\/span>Chartered Institute of Library and Information Professionals (CILIP) Special Interest Groups<\/span><\/b>, covering health and higher education, have identified concerning examples of removal and reduction of content relating to their work in public health, research, education, and science. Their recent <\/span>statement<\/span><\/a> invites members and the wider information profession community to share examples of how content, reports, datasets, evidence, and tools are being removed by US authorities.\u00a0<\/span>\u00a0<\/span><\/p>\n

What you can do:<\/span><\/b>\u00a0<\/span><\/h2>\n