Researchers are warning that as the clock ticks, invaluable data could be lost from the National Institutes of Health (NIH). The agency manages almost two dozen centers of research and public health data. It has implemented a Data Use Agreement (DUA), which unfortunately creates substantial hurdles to accessing and archiving this rich trove of information. With the review process, which was started under the Trump administration, still ongoing, the future of these datasets is far from clear.
First, researchers need to obtain a Data Use Agreement before they are allowed to download NIH data. This agreement is subject to the best practices disclosure risk review process. This process provides a mechanism to secure sensitive information while giving researchers access to critical datasets. Yet the strict terms of the DUA can make it difficult for researchers to efficiently download or archive valuable information.
NIH’s repositories hold essential research data from important fields like cancer, COVID-19, and Alzheimer’s disease. As these datasets are backbone for long-term repeat scientific studies, the future threat of losing them is shocking. If the repositories ever went offline, researchers would be left with irreversible consequences, potentially losing data to the ages.
The DUA is the critical document that functions as the formal partnership agreement between a research institution and the specific NIH agency involved. To prevent this from happening, it’s meant to protect sensitive data. This protection introduces a layer of complication for researchers hoping to access or archive NIH data. This can form an unnecessary barrier. It limits the work of researchers and can stall new discoveries in important public health research.
The review of NIH repositories has been controversial and is ongoing, leaving open questions about the continued accessibility of these resources. During the Trump administration, officials significantly increased their pressure on agencies to audit these archives. This bipartisan scrutiny then turned to how data is collected, used, managed, and shared. Such actions have prompted calls from the research community for clarity on how these changes may impact access to essential public health information.
