By Jorge Luis Lora Moran on April 12, 2025
The U.S. National Institutes of Health (NIH) has barred scientists from China and five other “countries of concern” from accessing 21 biomedical databases, which contain information on genetic variation, cancer cases, neurodegenerative diseases and more. The April 2 decision by President Donald Trump’s administration, which steps up a long-term effort to prevent foreign access to data deemed sensitive, also halts projects involving databases that include collaborators in these countries.
“At a time when the study of genetic variation is critical to identifying causes and cures for disease, this seems like a pointless expression of spite,” says Pedro Antonio Valdes Sosa*, a neuroinformatician at the University of Electronic Science and Technology of China who has used a database on infant brain development for his research. Specific databases include those that are “crucial to understanding brain disorders,” he says.
The other countries excluded from the databases are Cuba, Iran, North Korea, Russia and Venezuela. “This could be really devastating for the few good scientists left in Venezuela,” says Gladys Maestre, a Venezuelan-born neuroscientist at the University of Texas Rio Grande Valley who collaborates on Alzheimer’s disease research with scientists in her home country. “You need real data from real people to test your hypotheses.”
Former President Joe Biden had imposed some restrictions on foreign access to databases, but the new regulation, published April 2 and first reported by Fierce Biotech, tightens them significantly. It is a “technical update” to a rule issued by the U.S. Department of Justice (DOJ) on Jan. 8 that seeks to better protect all types of sensitive information, including biometric and genomic data, healthcare records and geolocation data, from foreign adversaries. The Justice Department claimed that hostile intelligence services could use such data for blackmail and coercion, identifying high-risk government personnel and sensitive locations, and offensive cyber operations. And access to “massive human genomic data,” the agency said in the January rule, could help adversaries develop new biological weapons.
Chinese researchers told Science in October 2024, during the Biden administration, that they were already intermittently denied access to the Adolescent Brain Cognitive Development (ABCD) Study database. Launched in 2018, the study follows some 11,880 children, enrolled at age 9 or 10, into adulthood, tracking how sleep patterns, smoking, and experiences such as social media use and playing sports and video games affect brain development. China embarked on a similar longitudinal study in 2023 that aims to enroll 26,624 children.
Now, Chinese scientists are completely excluded from the ABCD database, says a brain researcher who requested anonymity because he expects there will eventually be exceptions to the policy. “The high quality of ABCD data is a criterion for scientists around the world,” he says. “Now we are deprived of an important comparison for our own work.”
Since April 4, thousands of Chinese scientists have also been excluded from the Surveillance, Epidemiology and End Results (SEER) Program, a U.S. database of cancer cases and the largest such repository in the world, according to the South China Morning Post.
Cuban biomedical scientists, who had been tapping the now-restricted databases, also regret the move. “This new blockade will definitely delay our understanding of many diseases and potentially affect patients,” says Tania Crombet Ramos, medical director of the Center for Molecular Immunology in Havana.
In addition to banning access to the databases, the NIH is “terminating any remaining ongoing projects” involving the repositories if they include researchers or institutions in the countries of interest, Andrew Nixon, director of communications for the U.S. Department of Health and Human Services, the NIH’s parent agency, said in a statement. “NIH takes security oversight, including confidentiality, integrity and availability of participant data, very seriously,” he said. Nixon did not respond to a question from Science about how many projects are being closed or whether NIH has a mechanism for issuing waivers.
In a statement, BGI Group, a genomics powerhouse in Shenzhen, China, noted that Chinese scientists contributed data to some of the databases that are now off-limits, such as the National Center for Biotechnology Information’s genotypes and phenotypes database. That database, which includes genome-wide association studies and medical sequencing data, “represents a shared human legacy that … benefits all of humanity,” the company said. (In 2023, the U.S. Department of Commerce added three BGI Group companies to a trade blacklist because of concerns that their technologies could be used for surveillance of minority groups in China, a claim BGI Group dismissed as misinformation.)
“I’d like to think that the NIH action is a circumstance of geopolitical timing,” Maestre says. He says he understands the need to protect data, but worries that blanket restrictions could lead other countries to retaliate and exclude U.S. scientists from overseas databases.
Source: Grito De Baire