The Trump administration has blocked access to multiple data repositories maintained by the National Institutes of Health (NIH) for researchers in several countries, including a cancer statistics database used heavily by scientists in China.
The ban is effective April 4 and applies to institutions in China, Hong Kong, Macau, Russia, Iran, North Korea, Cuba and Venezuela, according to the notice announcing the restrictions.
The numerous controlled-access data repositories (CADRs) that are affected by the rule hold data on a vast swath of subjects including cancer, Alzheimer’s disease, mental health disorders, substance abuse and adolescent brain development.
“NIH is prohibiting access to and ending any remaining ongoing projects involving NIH CADRs and associated data by researchers and institutions located in countries of concern,” a spokesperson for the NIH Office of Extramural Research told Fierce Biotech in an emailed statement.
The new database ban reportedly stems from a February 2024 executive order signed by former President Joe Biden to prevent the targeted countries from accessing large amounts of Americans’ health and genomics data, according to the notice. However, the final rule issued by the Department of Justice based on this order, originally set to go into effect April 8, was intended to limit large transfers of data that are “commercial in nature,” according to a Jan. 8 announcement, “meaning that they involve some payment or other valuable consideration.”
Biden’s original executive order, as well as the final rule issued by the Justice Department under his administration, do not specifically mention CADRs. The Jan. 8 announcement of the final rule clarifies that a U.S.-based researcher could share data with a researcher in a "country of concern" because "the transaction does not involve the sale of data, licensing of access to data or similar commercial transaction involving the transfer of data."
The White House and the Department of Health and Human Services (HHS)—which oversees the NIH—did not respond to requests for comment from Fierce, including about how the April 4 rule may differ from the intended implementation of the Biden era order.
It's not immediately clear whether U.S. collaborators of scientists in targeted countries are allowed to send data to affected scientists who have lost database access under the April 4 rule. The NIH Office of Extramural Research did not respond to follow-up questions on the ability of affected researchers to collaborate with U.S. scientists using CADR data.
One of the newly banned databases is the National Cancer Institute’s (NCI's) Surveillance, Epidemiology and End Results (SEER) Program, which includes data on cancer occurrences across the United States. Starting on April 4, Chinese scientists were no longer able to log in to the SEER system, Chinese news outlet DeepTech reported.
The SEER database has grown immensely popular among Chinese cancer researchers since the first Chinese scientists published a paper using the database in 1999. A 2020 study found that researchers in mainland China published 1,566 research papers using SEER between 1999 and August 2020, including 459 in 2019 alone.
The NCI did not respond to a request for comment from Fierce.
The loss of access to these data repositories for researchers abroad could negatively impact the global scientific community.
“There is empirical research suggesting that scientific data is important for facilitating both scientific progress and then downstream innovation,” Bhaven Sampat, Ph.D., an economist at Arizona State University who studies the history, politics and economics of the NIH, said at an April 7 media briefing about the impact of recent changes at the NIH. Sampat said that though he is unfamiliar with the April 4 rule banning database access, in general “science is a cumulative process that relies on data sharing and relatively free data flows to function properly.”