With the Trump administration's communications embargo on public health agencies and the recent purge of CDC datasets, access to publicly available data has become unreliable. The administration has also forced the withdrawal of all scientific manuscripts either under review or awaiting publication to allow for the removal of language the administration deems counter to its own ideology. Allegedly these will be released soon, but some journal editors are pushing back, saying that the administration’s demands are in violation of their own publication policies.
But even as some CDC datasets have come back online, it remains unclear whether they have been compromised, which calls into question the quality of all U.S. government public health data going forward. The stated purpose of this censorship is to exclude information pertaining to climate change, gender identity, vaccines, and infectious diseases. Some suggest that the administration is seeking to eliminate any evidence that could pose a challenge to achieving their political agenda. For example, the U.S. Center for Disease Control was instructed to remove all data and language pertaining to gender, vaccines, climate change, HIV, and long COVID. This short-sighted censorship has been extended to all federal agencies. America will pay a high price for this censorship which, if continued, will put the country on a fast track to make America obsolete, especially in terms of biotechnology, healthcare, and the development of pharmaceutical therapeutics.
It is essential that the professionals in the sciences support each other as we navigate these alarming developments. Scientists and public health professionals have been actively resisting these draconian measures and taking action to provide short-term solutions. Several scientists and organizations have been raising the alarm and preserving data and public access in response to web pages going dark at the CDC, along with a proposed 8-year moratorium on infectious disease research. With RFK Jr. posed to take over the National Institutes of Health (NIH), it is not yet known what else will be censored or banned, nor to what extent the administration will downsize or micromanage its health agencies.
If the NIH is gagged for the foreseeable future, then we must find alternative sources of biomedical and public health data. We’ve pulled together some sources that are beyond the reach of the U.S. federal government and should therefore be reliable sources of information going forward:
Europe PubMed Central (Europe PMC) is the European equivalent of NIH’s PubMed and PubMed Central. Like PubMed, Europe PMC is a publicly available database of peer-reviewed research articles, including full-text articles, abstracts, and preprints. The platform is funded by over 30 research entities as well as some governments such as the UK.
Some organizations read the tea leaves and were able to respond to the crisis quickly, preserving critical data. At the Harvard T.H. Chan School of Public Health, students and researchers worked cooperatively to preserve data, scraping and downloading health equity datasets from government websites before they were shut down. This data is being shared from publicly available repositories such as Harvard’s Dataverse. Several different measures have been taken to preserve both the data and public access.
Another way to access pre-administration government data is through the Internet Archive, which has preserved and made publicly available all of the CDC data up to January 28th. Likewise, you can use their Wayback Machine to view previous versions of censored government web pages.
You can also find links to archives of every CDC webpage at ACASignups, and if you happen to work with environmental data, the Environmental Governance Data & Governance Initiative was able to preserve access to the Council on Environmental Quality’s Climate and Economic Justice Screening Tool (CEJST), which allows members of the public to view a map showing where in the U.S. people face marginalization and are disproportionately affected by climate change and environmental degradation.
If you require other types of government data, the Internet Archive has a helpful blog post with links to their other resources. Still can't find the data you need? The Boston University School of Public Health now has a portal where you can search for missing government data across multiple sites.
If you are a healthcare provider, the LIL_Science substack preserved many of the frequently used and in some cases federally mandated information sheets, which contain information about everything from how to treat sexually transmitted infections to the vaccine safety information that must be given to immunized patients by law. And for a comprehensive overview of all of the health data that was taken offline, see this KFF report.
Finally, for those who want to stay on top of infectious disease outbreaks, the International Society for Infectious Diseases (ISID) runs the ProMED alert system, which will automatically send notices whenever a new disease outbreak is reported. Given the current questions surrounding the risk avian influenza may pose to the public, this is an especially valuable resource.
Though it is chilling to have science and knowledge censored in such a manner, it is also inspiring and encouraging to see the scientific community banding together to preserve access to knowledge. The interconnectedness that has grown with the increase in collaboration seen in biomedical science and in public health is an asset that cannot be underestimated.
The ongoing situation with the Trump administration can also be thought of as an unmasking of our vulnerabilities. Science can no longer ignore the impact of politics on practice, nor should we try to ignore or downplay the very real inequities in our fields. Now is the time to embrace our strength in diversity and lay the foundations for a better future. Perhaps we can use this crisis to develop funding sources that are not so subject to the political whims of nations.
As the hosts of the podcast This Week in Virology (TWIV) say, when you mix science and politics you get politics. Judging from the last 5 years, the divorce is long overdue.
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