Patients were coerced to join Havana Syndrome study, National Institutes of Health says

An internal review board at the National Institutes of Health has decided to shut down a long-term study of Havana Syndrome patients that found no signs of brain injuries, after several participants complained of mishandled medical data, bias and pressures to join the research.

A spokeswoman for NIH said the internal review found that “informed consent” policies to join the study “were not met due to coercion, although not on the part of NIH researchers.”

“Given the role of voluntary consent as a fundamental pillar of the ethical conduct of research, NIH has stopped the study out of an abundance of caution,” said Jennifer George. She did not say who coerced the patients.

In a letter on Tuesday, Dr. Leighton Chan, the principal author of the study, told participants that “due to concerns about the study raised by some participants,” the review board decided to close it down. The letter does not mention what the review board found. The study was supposed to continue tracking these patients over years.

Chan did not reply to an email seeking comment, and NIH did not provide further information about the internal review findings or say whether they will be made public.

“Anomalous health incidents” — the U.S. government term for Havana Syndrome — have been reported in many countries, including the U.S. Several cases involving U.S. diplomats and CIA officers were first reported in Havana in late 2016 and 2017, giving rise to the name, although the Miami Herald later reported there was a case as early as 2014 in Germany.

The victims have described being exposed to sensory phenomena such as pressure and noise coming from a specific location and developed brain trauma and a variety of other symptoms like vertigo, tinnitus, migraine, visual problems and cognitive impairment. Many of the victims have been involved in work linked to Russia.

The corroboration that participants were coerced to join the NIH study will likely add to the debate surrounding Havana Syndrome and increase scrutiny over how the U.S. government has handled its investigation and treated the victims.

Though it hadn’t been published at the time, the NIH study was cited in an intelligence assessment in March 2023 concluding that Havana Syndrome was probably not the result of aggression by a foreign adversary and that most reported symptoms could be explained away by other causes, like pre-existing conditions or environmental factors.

Despite that assessment, at least 334 former and active government employees, military officers and relatives, including 15 children, have qualified to get treatment for Havana Syndrome in specialized military health facilities, according to a report by the U.S. Government Accountability Office. To be eligible for treatment in the military health system, a doctor must certify a brain injury or other significant symptoms that a known cause or a pre-existing condition cannot explain.

The NIH research examined MRIs and blood markers of people exposed to the incidents and found no evidence of mild traumatic brain injuries, contradicting earlier studies. It published its first results in March in two papers in the Journal of the American Medical Association.

But the results were immediately challenged by a group of participants who alleged several irregularities, including cooperation between NIH and the CIA to suppress medical data pointing to a traumatic brain injury diagnosis, pressures to join the study and the unauthorized disclosure of medical data to other government agencies by NIH researchers. Other scientists involved in previous Havana Syndrome studies also questioned the research’s methodology and results.

The NIH launched its internal investigation in April. At the time, Nicole Grant, the Institutional Review Board chair, emailed participants to inform them that the institution was investigating complaints about the study and asked them to complete a form with more information.

Participants were asked if they felt “pressured” about joining or remaining in the study, if they were led to believe that participation was required to be able to receive medical care at another medical facility, and if medical information collected during the study that would identify them was shared with others without their permission.

“Were you ever told or given the impression that your symptoms would not be accurately recorded by the NIH staff who were evaluating you?” another question asked participants.

Grant and the Office of the Inspector General of the Department of Health and Human Services declined to comment. It is unclear if the office has received the internal review findings.

The NIH study was made public in the medical journal amid news that the House Intelligence Committee was launching a formal inquiry into how spy agencies handled the Havana Syndrome investigation following complaints by whistle-blowers.

Congress has called for more answers following media reports pointing to possible Russian involvement. Lawmakers have also pressured government agencies, particularly the Department of Defense, which coordinates medical care through the Defense Health Agency, to treat the victims more expeditiously and spend the money allocated by Congress for such efforts.

Last week, U.S. Reps. Mark Green, the chairman of the Homeland Security committee, and August Pfluger, the chairman of the subcommittee on Counterterrorism, Law Enforcement, and Intelligence, wrote to Jake Sullivan, the president’s National Security Advisor, expressing being “deeply alarmed that these incidents continue to take place here and abroad.”

“We implore the Administration to take decisive action to investigate the causation and attribution of the anomalous health incidents, disrupt and deter the operations of any foreign entities conducting these attacks, and send a clear message to the world that these actions will not be tolerated,” they said in a letter.

“We also ask that the administration be fully transparent with the American people on the gravity these threats pose.”

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