This story was originally published by ProPublica. Republished under a CC BY-NC-ND 3.0 license.

For decades, the U.S. Department of State gave money to groups protecting free speech, human rights and persecuted minorities in poor and authoritarian countries. 

To decide what to fund, staffers with deep expertise typically pored over reams of information on abuses under the most repressive regimes and held an open competition to fund groups to work in those countries. 

This year, Trump administration officials presented State Department workers with their own list of organizations that should be funded. To the shock of many staffers and lawmakers, they proposed at least a dozen grants that would bypass the normal open bidding process. They also sought to give taxpayer dollars to groups aligned with conservative and anti-immigration movements in Europe as well as advocates for white South Africans, according to interviews and documents reviewed by ProPublica. 

Among the organizations appointees have considered funding in recent months are a British free-speech organization that has fought against bans on “gay conversion therapy” and an Afrikaner group run by a controversial figure who has called for self-governance of the white ethnic minority within South Africa. 

This type of giving would mark a stark departure from the traditional aid that helped torture victims and documented rapes, political violence and other abuses in some of the most oppressive countries in the world, according to more than a dozen former State Department employees. One new program with $4.9 million of competitive funding available to groups to develop “civilizational self-confidence in Europe” is slated for “research, conferences, cultural engagements, and support for civil society” in wealthy democracies. The call for proposals says recipients should “not attempt to reform the legislative processes,” but experts and lawmakers have expressed concern that the U.S. is seeking to influence politics in allied countries.

That emphasis on Western nations was evident in a grant the State Department has been working on for months to a fledgling British American think tank dedicated to “renewing our Judeo-Christian culture and civilisational mission.” After pushback from Congress, the State Department abandoned those plans in recent days.

“I’ve never before seen U.S. government funding for such groups,” said William Allchorn, a senior research fellow at Anglia Ruskin University and an expert on radical-right extremism in the United Kingdom. “It’s crossing the Rubicon, isn’t it?”

A review of proposed grants shows several are being directed to more traditional human rights purposes, but even some of those have raised concerns in and outside the State Department.

Strict agency rules have long required an open bidding process whenever possible to guard against waste, fraud and abuse. Generally, the State Department is allowed to offer awards directly to a single entity or to a small group of potential grantees in rare instances, such as when only one organization is capable of the work or an emergency necessitates providing money so quickly that open competition is impossible. It has also used such “sole-source” and “limited-source” awards, which are not publicly announced, in highly sensitive countries where openly working on human rights can be dangerous.

None of those justifications appear to apply here, according to contracting experts and former staffers consulted by ProPublica. The situation is all the more concerning, they said, because Trump officials handpicked the potential recipients, decisions previously made by a panel of government experts who evaluated applicants based on the organizations’ experience and qualifications. 

“It’s not good governance to have political appointees give grants to individuals for unknown reasons,” one former bureau staffer said.

Directing awards to organizations in high-income countries further complicates the funding. The practice is so unusual that an internal waiver justifying the choice is typically required. 

The State Department did not answer when asked whether it had sought waivers for the grants to high-income countries. 

During private briefings this month, members of Congress expressed concern over both the list of potential recipients and the plan to award no-bid or limited-bid grants, according to officials familiar with the closed-door meetings who weren’t authorized to publicly discuss them. 

In response to a detailed list of questions about this story, the State Department sent a short written response, noting that “programs are still in active deliberation and receipt of a grant is not guaranteed to any organization that does not meet all requirement and standards for federal grants.” A State Department official who declined to be named stressed that the process for awarding grants was ongoing and that multiple offices provide input. They also said the administration has serious concerns about the human rights situation in South Africa that need to be addressed. 

Asked about the potential grants, Sen. Jeanne Shaheen, a Democrat from New Hampshire and the ranking member of the Senate Committee on Foreign Relations, said Congress expects the State Department “to invest resources to advance human rights, democratic institutions, civil society, freedom of expression and worker rights” and that the proposals are “an appalling departure from that practice and an affront to our democratic allies.”

“These awards suggest that the Department intends to select awardees for federal funding based on their political ideology,” Shaheen said, “not in the interest of American taxpayers or national security.” 

Internal records and interviews show one of the key figures involved in the grants is Samuel Samson, a 27-year-old deputy assistant secretary of state who previously worked as a fundraiser for a group that aims to bring people with an “America first” worldview into government. 

On the day of President Donald Trump’s second inauguration, Samson started work as a senior adviser to the Bureau of Democracy, Human Rights and Labor, also known as DRL, the State Department unit that selects and distributes the human rights grants. 

Over the past 18 months, he has courted far-right leaders in Europe, an area with which he believes the U.S. shares a “common civilizational struggle.” In recent weeks, Samson has defended the agency’s grantmaking plans during private meetings with lawmakers.

One group expected to receive a no-bid grant is the Free Speech Union, a British organization founded in 2020 to counter “cancel culture.” The group often steps in to defend people accused of being transphobic and has created a petition opposing the U.K.’s proposed ban on discredited therapy practices that attempt to convert gay people to heterosexuality. It’s unclear if the grant would go to the British-based organization or its international offshoot. The $5 million grant is to be used to combat “digital overregulation,” provide support for individuals facing “deplatforming” and advocate against “restrictive online safety and hate speech laws,” according to a document reviewed by ProPublica. Trump officials met with the group during a European tour late last year, according to Politico. 

Scholars said the U.S. government’s support for these groups could give them a layer of legitimacy they wouldn’t otherwise have. 

“We see them as intellectualizing or sanitizing radical-right ideas that are then taken up by the parties in power,” said Allchorn, the U.K. extremism expert.

The Free Speech Union’s website says it is nonpartisan and does not take government funds. In response to questions from ProPublica about the potential grant, the organization’s founder, Toby Young, said, “We have neither applied for nor been awarded a grant from the US State Department or any other branch of the US Government.” He did not respond to criticisms about the award or his organization.

The largest award the bureau has put forward this year, $40 million, is for the Victims of Communism Memorial Foundation, which was created by Congress and signed into law by President Bill Clinton. The foundation’s goal is to memorialize those killed by communist regimes and pursue freedom for people still living under totalitarian rule. 

The proposed sum is staggering to people familiar with the State Department’s allocation practices and would dwarf the organization’s budget. Victims of Communism has received a handful of government grants in the past, but for much smaller sums. Its most recent publicly available tax forms, from 2024, show its total assets come to about $12 million. Four sources familiar with the foundation’s previous U.S.-funded work questioned its ability to manage such a large award. 

Samson has a personal connection to the organization. The foundation’s board chair, Elizabeth Spalding, is a visiting fellow at a graduate school branch of Hillsdale College in Washington, D.C.; Samson was enrolled in the same small graduate program of the Christian conservative college as recently as this year, according to his LinkedIn profile (which is no longer publicly available). Spalding’s husband, Matthew, is that graduate school’s dean, and Samson has taken classes with one or both of them, according to a State Department official.

The State Department official who declined to be named said Samson’s relationship with the Spaldings had nothing to do with the grant.

The foundation’s proposed award is to “amplify the voices of dissidents and political prisoners while educating global audiences about the dangers of communist and authoritarian regimes,” according to a document reviewed by ProPublica. 

In response to questions from ProPublica about the award and concerns about its ability to manage it, the foundation said it was not aware of the proposed funding, but “if true, the 100 million victims murdered by communism in the past, and another 1.5 billion men, women, and children still enduring communism today will rejoice.”  

The State Department declined to comment on awards in process but noted that Victims of Communism has long worked with the State Department. “As President Trump has said, communism is a mortal threat to American liberty — and as Secretary Rubio has repeatedly emphasized, America will not allow radical extremists to undermine our sovereignty and national security,” the agency said in a statement. “Our foreign assistance programming is aligned to support our strategic priorities.” 

Trump officials are also planning to finance at least one organization to research crime and atrocities against minority populations in South Africa. This spring, DRL staff were initially told to begin the process of awarding funds to Lex Libertas, a South African organization founded by a prominent member of the nation’s white Afrikaner movement. The group, which claims that white South African farmers are victims of racial discrimination and violence, is fundraising to place 3,000 white crosses on the National Mall in remembrance of attacks on South African farmers. 

The proposed award to fund the South African crime research was later widened to allow other invited groups to apply for a $1 million grant, according to people with knowledge of the process. The State Department declined to say whether Lex Libertas will be among those invited to compete, saying the grant is still under deliberation.

Extensive research shows white South African farmers are not victims of crime at higher rates than other groups. But Trump has argued there is a genocide of white South Africans and is using claims that white people are subjected to disproportionate violence to justify cutting off South Africa’s funding for HIV treatment and research. 

Former diplomats told ProPublica that it makes little sense to focus on the victimization of white South Africans given the enormous suffering elsewhere in the region. “It’s laughable to suggest that on the African continent, the prime issue of human rights concern is whites in South Africa,” one former agency official told ProPublica.

Lex Libertas did not respond to questions.

One of the most controversial grants that officials singled out for funds was recently dropped, the State Department official told ProPublica. The decision came after Democratic lawmakers raised objections during briefings last week about the months-old organization and its agenda. That grant was to 878, a British American think tank created this year focused on “existential threats to Britain, to America, and to our shared Judeo-Christian civilisation,” according to its website. The sole-source $7 million grant aimed to advance “Anglo-American values” in the U.K., Europe and “allied partner countries,” according to a document ProPublica reviewed.

878 did not respond to questions.

Since creating a bureau to focus on human rights in 1977, the State Department has championed human rights and democracy in more than 100 countries. Its awards have sought to support documenting and investigating rapes committed during political violence in Burma; preventing torture in Tunisia and rehabilitating torture survivors in Syria; and combating pervasive sexual violence in Mauritania. 

Since at least 2011, as anti-LGBTQ+ laws and violence spread globally, the bureau added a specific focus on people persecuted for their sexual orientation or gender identity.

Throughout most of its existence, DRL has enjoyed bipartisan support. Democrats applauded its championing of international labor standards and marginalized communities, while Republicans favored its defense of democratic freedoms in China, North Korea, Cuba and other communist countries. As a senator, Marco Rubio was a strong supporter of the bureau and human rights broadly, once arguing from the Senate floor that safeguarding the freedoms of gay men who were persecuted in Chechnya — and all people — was in the national interest. In 2018, he urged the president to appoint an assistant secretary to oversee DRL, a post Trump had left vacant for over a year. 

But after Rubio became secretary of state in January 2025, the fate of DRL dramatically changed. Trump suspended all foreign aid in his first week in office. Within months, cuts by Trump’s newly installed Department of Government Efficiency decimated the bureau, and Rubio closed most of its offices. In April 2025, Rubio published a Substack post smearing the bureau he once championed as “a platform for left-wing activists to wage vendettas against ‘anti-woke’ leaders.”

Samson also sent shock waves through the bureau. In March, he traveled to the U.K., meeting an anti-abortion protester and the anti-immigration politician Nigel Farage. In his own essay on the State Department’s Substack, Samson lashed out at the U.K. for arresting anti-abortion protesters and at Germany for labeling its hard-right Alternative for Germany party “extremist,” likening the countries’ actions to the “censorship, demonization, and bureaucratic weaponization” used against Trump.

Meanwhile, DRL’s remaining skeleton crew was tasked with removing trigger words from documents. “We would try to talk about human rights defenders in talking points, only to have them struck,” said one former bureau employee, requesting anonymity for fear of retribution. 

“We went from having a real, dynamic appreciation for individuals and their human rights and fundamental freedoms to erasing that, especially if individuals were part of an underrepresented group or marginalized community,” the former employee said.

The bureau is working with a severely reduced budget — about $190 million compared with over $500 million in 2024. Now the administration is preparing to put money behind its new priorities.

“We’re just implementing the agenda of the president as we’ve been directed through the national security strategy and the White House,” the State Department official told ProPublica.

This story was originally published by ProPublica. Republished under a CC BY-NC-ND 3.0 license.

Frank Ssekamwa says the United States presented his country with an impossible choice. If it accepted the terms of a new health agreement, Uganda would have to give the U.S. access to the data of millions of his fellow citizens — a decision he worries would make their personal information more vulnerable to breaches and possible exploitation.

But if it refused, the East African nation would likely lose out on more than a billion dollars to address HIV, malaria, tuberculosis and other illnesses, even as its people face ongoing threats from Ebola and other deadly infectious diseases. 

So, on Dec. 10, it agreed.

“If you take the deal, you’re going to be exploited. If you don’t take it, you’re going to die,” said Ssekamwa, an attorney and digital rights expert in Uganda. “It’s the essence of digital colonialism.”

Across Africa, countries have faced similar dilemmas as the U.S. has held a series of closed-door negotiations in which lifesaving aid has been conditioned on access to citizens’ health data. The negotiations come in the wake of the dismantling of the U.S. Agency for International Development, which — in contrast with the new contracts — provided billions of dollars in aid with few strings attached. Officials in Zambia, Zimbabwe and Ghana have been so outraged by the demands that they rejected the initial deals. 

The demand to access health data is central to the Trump administration’s new America First Global Health Strategy, an openly transactional approach that seeks to leverage the desperate need for medical treatments abroad. Aid will now be given “in a way that directly benefits the American people and directly promotes our national interest,” Secretary of State Marco Rubio stated in September.

The State Department declined to publicly release global aid and data-sharing agreements it has signed with more than 30 countries as part of its new approach. But a ProPublica analysis of nine of the deals offers a window into the extensive U.S. demands for access to data — and the potential risks and vulnerabilities for the citizens of countries that have signed them. ProPublica also reviewed a data-sharing agreement struck with Uganda, which has not previously been reported; a data agreement with Kenya; six agreements over the sharing of pathogens that can cause pandemics that were made public by the State Department this week; generic templates of deals for sharing both data and pathogens that can cause pandemics; and an analysis of the documents the advocacy group Public Citizen shared exclusively with ProPublica. 

ProPublica also consulted more than a dozen experts in data privacy and global health, including several with direct knowledge of U.S. policy who said that the insistent demands for data access and other resources as a condition of aid are unprecedented. Without seeing the full suite of agreements, they could not identify all vulnerabilities. But they spotted some red flags: The terms of the deals are vague and lack language standard in most data-sharing agreements that adequately limits what data is collected and how it can be used. That increases the risk that individuals’ personal data could be exposed, misused or commercialized without their consent.  

In the Ugandan data deal, the U.S. will get direct, real-time access to nine of the nation’s health data systems for seven years, including the central repository that stores all of its health information, lab data, data collected by community health workers and, critically, its system for managing individuals’ electronic medical records. The agreement calls for the sharing of aggregated data with all personally identifiable information removed. It also says the data should be used for delivering and auditing healthcare services. 

But lawyers and digital privacy experts argue that the deal raises questions about who will have access to the massive cache of health data and whether it could be inappropriately accessed and exploited.

Some expressed concern that, because it is possible to reverse-engineer data that has been anonymized, people with HIV, tuberculosis and other diseases could have their records exposed.

Stephanie Psaki, who served as the U.S. coordinator for global health security under President Joe Biden, described the Trump administration’s approach as a “blunt instrument of ‘just give me the login to your data systems.’” 

“The U.S. would never agree to that,” she said, if the deal were offered in reverse.

In Uganda, the U.S. will provide up to $1.7 billion over five years for global health security and the treatment and prevention of deadly conditions such as malaria, tuberculosis, HIV and polio. In the past, the U.S. gave this aid without asking for direct benefits in return, saving an estimated 170,000 Ugandan lives per year. 

While a significant investment, it is less than the U.S. previously spent in Uganda and will decrease every year of the agreement. By 2030, the African nation will receive 45% less global health funding than when Trump retook office, according to an analysis by Vincent Lin of Partners in Health, which provides healthcare in poor countries. 

Several experts said there is broad support for some of the goals of the new plan for aid, including reducing African countries’ dependence on the U.S. for healthcare needs. But they worry the transactional nature of the approach could backfire by undermining trust or, in some cases, driving nations to reject deals altogether.

After withdrawing from the World Health Organization and losing access to its global network that tracks and combats disease outbreaks, the U.S. is attempting to obtain the information necessary to address potential pandemics through a patchwork of deals with individual countries. Each of the agreements ProPublica reviewed includes a section on responding to outbreaks. And some countries have signed separate pathogen-sharing agreements, which state that countries must “initiate sharing specimen(s) and related data” within five days of a U.S. request. The Trump administration is also planning unprecedented involvement of private companies to manage and process data.

The State Department told ProPublica that it needs access to the data to improve health outcomes in recipient countries and keep Americans safe. The new approach also requires countries to invest more in their own health systems in exchange for the aid, a promise many countries will likely struggle to fulfill. And, in some cases, including the deal with Uganda, it aims to boost local manufacturing through partnerships with American companies.

The State Department said it took multiple factors into account to ensure the required investments from other countries were “realistic and achievable.”

“The United States is investing billions of dollars in other countries’ health systems to fight infectious disease. In return, we expect governments to increase their own spending on health, so programs are sustainable and under genuine national ownership, not permanently financed by U.S. taxpayers. For the first time, both sides are putting skin in the game to ensure lasting impact,” a State Department spokesperson said in response to questions about the agreements.  

In response to follow-up questions from ProPublica, spokesperson Tommy Pigott said the agreements “share only the same kinds of aggregated, de-identified data that has been shared and used for years in the fight against HIV/AIDS, malaria, tuberculosis, and other diseases. All data sharing is consistent with each country’s laws and approvals. No personally identifiable information is being received or shared by the United States government.”

Uganda’s Ministry of Health, Ministry of Foreign Affairs, Personal Data Protection Office and embassy in Washington, D.C., did not respond to questions for this article. 

In the age of artificial intelligence, large health data sets have become so valuable they’ve been referred to as the new gold. The precise value of the health data of an entire nation is unclear, but it could be extremely valuable to AI-driven companies for training models. The industry of buying and selling such information troves is worth billions. And countries around the world have come to regard their citizens’ health records as national assets that deserve special protections and can confer economic and strategic advantages. 

Yet the agreements, which are part of a strategy the State Department openly states is intended to make America “more prosperous” and “promote American health innovations,” provide no guarantee that Africans subject to them will have a say in what happens with their data or receive a fair share of its benefits. “Once companies get this data, the value is being accrued. But there’s no way for the [African] population to know how companies will use it,” said Jane Munga of the Carnegie Endowment for Intenational Peace, who has argued that the agreements may violate African privacy laws.

Africans have also expressed concern that they will not be able to access and benefit from medicines and vaccines developed from pathogen samples shared with the U.S. Five of the six specimen-sharing agreements reviewed by ProPublica state that, in the event that a medical product is developed primarily from a specimen from the country, the U.S. government “shall prioritize” a request from that government behind the needs of the U.S. Only one of the agreements, with Nigeria, commits the U.S. to facilitating “priority access” to — and the donation of — any medical products developed using the specimens.

The phenomenon of extracting information and samples from less-resourced populations and failing to credit and compensate them for their contributions to medical developments is well known enough to have several names, including “parachute science.” Just a few years ago, countries, including some in Africa, hosted COVID-19 vaccine trials, only to later struggle to access the shots they helped to develop.

Each agreement includes “benefit-sharing provisions,” the State Department said in response to questions. 

After the Trump administration dismantled USAID, the world’s largest provider of humanitarian assistance, it also drastically reduced funding for international health work done by the Centers for Disease Control and Prevention and severely scaled back the President’s Emergency Plan for AIDS Relief, which combats HIV globally. In addition to withdrawing from the WHO, the U.S. removed itself from international negotiations over a pandemic agreement intended to affirm countries’ sovereign rights to their biological resources and ensure equitable access to medical interventions.

Brad Smith, an entrepreneur who served in the first Trump administration, is now in charge of creating the system that would rise from the ashes. Before joining this administration, Smith founded three companies with business models that rest in part on using data to reduce healthcare costs, including CareBridge, a home care provider that sold for a reported $2.7 billion in 2024. During the presidential transition that year, Smith led the government efficiency panel that would become Elon Musk’s Department of Government Efficiency. After Trump took office, he presided over some $67 billion in sweeping cuts to the Department of Health and Human Services before being brought on as an adviser to the State Department. 

Although the humanitarian aid system had been largely dismantled, Congress required the executive branch to continue providing aid. So Smith and his team had to find new ways to get the funding to countries, ensure that it was being spent wisely and address potential pandemics — all without most of the international partners and staff the government had previously relied on to carry out this complex work. 

A Rhodes scholar known for his intense work ethic, Smith threw himself into the effort. State Department staff fielded calls from him at all hours of the night to explain budget items on spreadsheets. Through his personal lawyer, Smith referred questions to the State Department.

One of the greatest challenges lay in the handling of health data. In the past, PEPFAR, the HIV program, built its own systems to handle anonymized data, separate from government health records — a setup that Trump administration officials and others have criticized as inefficient.

The America First plan proposed standardizing data collection and processing within countries. The Ugandan data agreement requires the country to provide the U.S. — and its contractors — with logins “or other secure access mechanisms” to directly enter the country’s data systems. The new approach, U.S. officials say, will enable the U.S. to continue auditing programs and track outbreaks. 

The agreements ProPublica reviewed include statements about the U.S. government’s intent to ensure data security and say that the data is being accessed for the purposes of addressing diseases and auditing that work, but they leave open the possibility that sensitive information could be revealed, according to the data privacy experts ProPublica consulted. 

At particular risk are countries that don’t have national data privacy laws, such as Liberia, whose memorandum of understanding requires “interlinked and interoperable” data systems for “surveillance, laboratory, response, health, environment, agriculture.” That country’s main health agreement doesn’t require the U.S. to limit the amount of data it takes to the least needed, a standard clause in U.S. contracts, according to Abdoul Jalil Djiberou Mahamadou, a recent postdoctoral fellow focusing on bioethics at Stanford University. (Neither Liberia nor the State Department has released the supplemental data-sharing agreement.) “Once data is breached, it’s nearly impossible to get it back,” Mahamadou added.

The Liberian government did not respond to a request for comment.

The Ugandan data-sharing agreement says it will comply with the laws of both nations and permits the sharing of “sensitive personal data” if the consent of individuals whose data is shared is obtained, there is a compelling public health emergency of international concern and it is the only way information can be provided in a “timely and accurate format.”

Ssekamwa, the digital rights expert who also founded and runs the African Centre for Digital Justice, said there are important questions that haven’t been answered by the Ugandan government.

“Does the U.S. have appropriate data protections? Can the systems provide anonymized data? Are they really up to that standard?” said Ssekamwa. “If I’m someone who has had health issues, can you deny me a visa because of the health issues I’m having?”

Psaki, the former global health security coordinator, worried about the haste with which the changes to data access are happening. “Even in the best of circumstances, you can’t go from having parallel data systems that were established over 20-plus years to finding some way to integrate those data systems in six months.” 

Speed has been a hallmark of the America First global health effort. In September, just a month after Smith joined the State Department, it launched the strategy at an event co-sponsored by the U.S. Chamber of Commerce and five large pharmaceutical companies. By November, Smith was crisscrossing the African continent with a small team of negotiators, trying to persuade dignitaries to agree to deals. 

The State Department said the deals were “negotiated in a thoughtful and strategic way over many months.” 

On Dec. 4, Kenya became the first country to sign, during a triumphant celebration with Rubio and President William Ruto in Washington. Outcry over the agreement had already begun two days earlier, when a Kenyan activist named Nelson Amenya announced on the social platform X that he had seen a sample of the specimen-sharing agreement as well as a legal analysis that showed it would violate Kenyan law.

As a condition for receiving $1.6 billion in aid, the Kenyan government agreed to provide access to seven years’ worth of health records — two years longer than the U.S. would provide financial support. 

Although the Kenyan data-sharing agreement states that the U.S. will take “all reasonable measures to protect the confidentiality of information” and abide by American and Kenyan laws, Amenya worried that wouldn’t be enough. “Every HIV test, TB diagnosis, malaria case – accessible to US officials,” he wrote in the post, which now has one million views. “Your medical records, your children’s health data – all exposed.”

A few days later, a Kenyan senator named Okiya Omtatah sued members of the Kenyan government over the agreement, arguing that it poses a threat to citizens’ constitutional right to privacy by “allowing broad foreign access to sensitive data.” A Kenyan nonprofit also sued, and more than 50 groups weighed in on their side, describing the document as giving the U.S. “excessive access” to African data and raising the possibility of serious human rights violations. 

In court filings, the Kenyan government argued that it is obligated to achieve the “highest attainable standard of health” and that it is unable to do that on its own. After blocking the deal for months, in May, the Kenyan court temporarily allowed implementation of the agreement to proceed while it considers the case.

Since outrage bubbled up in Kenya, some other countries have negotiated shorter terms for sharing data and pandemic specimens, and have inserted additional protections, according to the Public Citizen analysis.

Still, groups across Africa have sounded alarms about dangers inherent in these provisions, including data breaches. Examples of such unauthorized access to personal data abound, including a recent case where the healthcare data of some 500,000 participants in the UK Biobank wound up listed for sale on the Chinese website Alibaba. 

Revealing whether someone has had an abortion, mental health condition, substance use treatment or sexually transmitted disease can be devastating anywhere. In Africa, research has shown it can lead to discrimination and violence. And even when personal information has been removed, individuals in “anonymized” data can be reidentified using AI and other tools. 

The Ugandan data-sharing agreement calls for the U.S. government to “promptly notify the Government of Uganda of any unauthorized access” in such cases and requires the parties to conduct a joint breach assessment and remediation plan afterward. But by that point, it may be too late, Ssekamwa fears. “Once the data gets out of Uganda, we are skeptical that the government of Uganda will actually have any power to control it,” he said.

The secrecy around both the negotiations and the agreements has raised further suspicions. The State Department has declined to share the agreements, telling ProPublica the agency will release them when negotiations with all partner governments are complete and describing its actions as “protecting sensitive negotiations—not ‘secrecy.’” In response to a public records request filed by ProPublica, the State Department said it planned to provide the documents in September 2027. The advocacy group Public Citizen recently filed suit against the federal government in an effort to obtain the documents. 

“Why are they hiding the agreement if they think the terms are OK?” asked Bernard Okpi, a Nigerian lawyer who sued his government in March, alleging that the deal violates the country’s constitutional right to privacy and promotes religious discrimination by prioritizing funding for Christian faith-based health facilities. That suit is pending, and the Nigerian government did not respond to questions from ProPublica.

The State Department said that the agreement with Nigeria “was negotiated in connection with reforms the Nigerian government has made to prioritize protecting Christian populations from violence.”

The Trump administration says that its new global health strategy is designed to save lives and keep the U.S. — and the world — safe from disease outbreaks. But ultimately its hard-driving and secretive negotiations may work against those goals.

While the administration aspired to strike agreements with 50 nations, including the three countries that walked away from negotiations in part over concerns about data sharing, it has fallen far short of that number. (In Zambia, officials also balked at U.S. demands for critical minerals.) The loss of aid in those countries is already proving to be devastating. 

Despite the Trump administration’s stated goal of putting “America first,” the U.S. may feel the consequences of those failed negotiations, too, as mistrust compounds the loss of long-standing systems that provided care and responded to disease outbreaks. 

“It’s in everyone’s interest to have a comprehensive approach to respond to an outbreak early,” said Psaki, who pointed to the quickly escalating number of Ebola cases in the Democratic Republic of Congo as evidence. While that country struck a healthcare deal with the U.S., five of the nine countries bordering it have not. “We need to get data and samples from all nine countries to collaborate effectively on that outbreak, and now we don’t have that.”

The State Department said the U.S. has responded swiftly to the outbreak and has provided over $270 million to the global fight against Ebola.

In Uganda, where people have also fallen sick and died from Ebola, Ssekamwa said that his country needs all the help that the healthcare deal can bring, including improved protection from outbreaks, but there needs to be more robust protection of people’s personal data.  

“We are happy to benefit from the technological advancement and the fruits of big data,” he said. Instead, he said, “the U.S. has left so many gaps within the agreement, which can be exploited in their favor.”

This story was originally published by ProPublica. Republished under a CC BY-NC-ND 3.0 license.

Erin McCanlies was listening to the radio one morning in April when she heard Robert F. Kennedy Jr. promising to find the cause of autism by September. The secretary of Health and Human Services said he believed an environmental toxin was responsible for the dramatic increase in the condition and vowed to gather “the most credible scientists from all over the world” to solve the mystery.

Nothing like that has ever been done before, he told an interviewer.

McCanlies was stunned. The work had been done.

“That’s exactly what I’ve been doing!” she said to her husband, Fred.

As an epidemiologist at the National Institute for Occupational Safety and Health, which Kennedy oversees, McCanlies had spent much of the past two decades studying how parents’ exposure to workplace chemicals affects the chance that they will have a child with autism. Just three weeks earlier, she’d been finalizing her fourth major paper on the topic when Kennedy eliminated her entire division. Kennedy has also overseen tens of millions of dollars in cuts to federal funding for research on autism, including its environmental causes.

For 20 years, Kennedy has espoused the debunked theory that autism is caused by vaccines, dismissing evidence to the contrary by arguing that vaccine manufacturers, researchers and regulators all have an interest in obscuring their harms.

He remains skeptical of the scientists who have been funded by his own agency to study the neurodevelopmental condition. “We need to stop trusting the experts,” he told right-wing host Tucker Carlson in a June interview, going on to suggest that previous studies that found no relationship between vaccines and autism were marred by “trickery” and researchers’ self-interest.

In contrast, Kennedy told Carlson that under his leadership, and with a new, federally funded $50 million autism research initiative, “We’re going to get real studies done for the first time.”

Some autism researchers fear that the effort will manipulate data to blame the condition on vaccines. “Kennedy has never expressed an open mind, an open attitude towards what are the fundamental causes of autism,” said Helen Tager-Flusberg, a Boston University psychologist who founded a coalition of scientists concerned about his approach to autism. In a June statement, the group said the initiative lacks transparency and that Kennedy “casually ignores decades of high quality research that preceded his oversight.”

As Kennedy promotes his new initiative, ProPublica has found that he has also taken aim at the traditional scientific approach to autism, shutting down McCanlies’ lab and stripping funding from more than 50 autism-related studies. Meanwhile, he has stood by as the Trump administration encourages the departure of hundreds of federal employees with experience studying the harm caused by environmental threats and rolls back protections from pollution and chemicals, including some linked to autism.

Kennedy did not respond to requests for an interview, and an HHS spokesperson did not answer specific questions from ProPublica, including those related to the concerns of the coalition of autism scientists. “Under the leadership of Secretary Kennedy, HHS is taking action on autism as the public health emergency it is,” the spokesperson wrote. “NIH is fully committed to leaving no stone unturned in confronting this catastrophic epidemic — employing only gold-standard, evidence-based science. The Department will follow the science, wherever it leads.”

Genetic factors account for a significant portion of autism cases. Research like the kind McCanlies and other government-funded scientists have conducted over the past two decades has established that environmental factors have a role, too, and can combine with genetics. Multiple factors can even converge within the same individual. Some of those environmental risks could be reduced by the very measures the Trump administration is rolling back.

Kennedy would have been well positioned to advocate for researchers looking into the environmental causes of autism while sitting on President Donald Trump’s cabinet.

The nephew of President John F. Kennedy and son of his former attorney general, Bobby, Kennedy spent decades as an attorney battling some of the world’s most notorious corporate polluters. Once heralded by Time Magazine as one of the “heroes for the planet,” he railed against actions by the first Trump administration, complaining in his 2017 introduction to the book “Climate in Crisis” that 33 years’ worth of his work was “reduced to ruins as the president mounted his assault on science and environmental protection.”

But recently he has remained publicly silent as the Environmental Protection Agency halts research and weakens regulations on air pollution and chemicals, including some McCanlies and her colleagues have identified as possible factors in the development of autism.

“I don’t think he’s aware of my work,” McCanlies said, “or most of the literature that’s been published on what the causes of autism are.”

McCanlies was studying how a toxic chemical, beryllium, causes chronic lung inflammation in workers when she began to think seriously about autism.

It was 2005, and her college-age stepson had a job shadowing children with autism. As he described helping them navigate playground dynamics, reminding them to return a wave or a greeting, McCanlies wondered whether their behaviors might be tied to chemicals their parents had encountered on the job. Could the exposures have altered genes their parents passed down? Could they have infiltrated the kids’ developing brains through the womb or through breast milk?

The questions remained abstract until McCanlies met another researcher named Irva Hertz-Picciotto, who had a unique data set. She had collected detailed information on the occupations of two large groups of parents: those who had children with autism and those whose kids developed neurotypically. Comparing the groups’ chemical exposures before their children were born could help illuminate causes of the condition, McCanlies realized.

Hertz-Picciotto, an environmental epidemiologist based at the University of California, Davis, was a pioneer in the search for the causes of autism. In 2009, she published a much-cited paper highlighting a sevenfold increase in diagnoses in California. While others had asserted the rise was due to increased awareness and broadened diagnostic criteria, Hertz-Picciotto found those factors could only partially explain it. She and others went on to document additional contributors to autism risk, including parental age at the time of birth, a mother’s fever during pregnancy and more traditional environmental considerations, such as chemical exposures.

McCanlies hadn’t studied autism. But she offered Hertz-Picciotto her experience in genetics and epidemiology as well as the considerable resources of her agency. NIOSH was established in 1970 to investigate the dangers of the workplace, and its statisticians and industrial hygienists were among the world’s experts on the health impacts of chemical exposures.

Their first collaboration, published in 2012, used Hertz-Picciotto’s data to see if parents of children with autism were more likely to have been exposed to chemicals already thought to be dangerous to the developing brain. The work was technical and time-consuming, but the analysis showed a clear relationship: Mothers and fathers of children with autism were more likely than the parents of unaffected children to have been exposed to solvents such as lacquer, varnish and xylene on the job. These solvents evaporate quickly and can be easily inhaled or absorbed through the skin. Chemical plant workers, painters, electricians, plumbers, construction workers, cleaners and medical personnel are among those who may be exposed to these solvents.

The sample size was small — just 174 families. But the results lined up with recent findings showing possible links between autism and exposure to metals and certain solvents during pregnancy or early childhood, including a solvent called methylene chloride. They also tracked with studies linking the chemicals to miscarriage, reproductive problems, birth defects and developmental problems other than autism.

McCanlies and Hertz-Picciotto followed up with a 2019 study that looked at more than 950 families. It showed that women exposed to solvents at work during pregnancy and the three months leading up to it were 1.5 times more likely to have a child with autism than women not exposed to the chemicals. (The study did not find a link for chemically exposed men.)

Their third study, published in 2023, took the link between solvent exposure and autism as a starting point. Using blood samples to examine the genetic makeup of the parents of children with autism, McCanlies and Hertz-Picciotto found that when exposed to solvents on the job, people with specific variants of 31 genes had an especially elevated risk of having a child with autism. Their genetic makeup appeared to increase the risk that solvents by themselves posed. Some of those 31 genes help cells connect with one another; others play a role in helping cells migrate to different areas so they can grow into the various parts of the brain; still others ensure that cells clear away toxic substances.

Researchers were also making strides under the National Institute of Environmental Health Sciences, a division of Health and Human Services, which has financed investigations into dozens of environmental contaminants. Several have been linked to autism, including air pollution, certain pesticides, a plastic additive known as BPA and diesel exhaust, which causes “autism-like behavioral changes” in mice. In 2021, Hertz-Picciotto co-published a study linking “forever chemicals” called PFOA and PFNA with the condition. (In 2023, a second paper also found an association with PFNA.) Other government-funded research has established a link between autism and another solvent, trichloroethylene, also known as TCE, which has been used for dry cleaning, manufacturing and degreasing machines.

Together, the results have shown that many exposures can increase the likelihood of autism, and that there can be multiple causes for any one person.

At least one exposure can have the opposite effect: A study by a researcher named Rebecca Schmidt — and funded by the NIEHS and NIH — found that a B vitamin called folic acid was associated with a significant decrease in the chances of an autism diagnosis. More than a dozen studies have since confirmed the association.

One problem hung over much of autism research. The sweeping diagnosis includes everyone from people who treasure their neurological differences to those with debilitating symptoms, including repetitive behaviors, excruciating sensitivity to touch and sounds, and difficulty responding to social situations. McCanlies and Hertz–Picciotto wondered whether certain chemicals were linked to the most severe cases or to specific symptoms.

In 2023, they set about finding out.

They were preparing to submit their study for publication when newly inaugurated Trump put Kennedy in charge of America’s health.

Despite having made chronic health conditions the focus of his agenda, Kennedy has quietly abided environmental policies that will exacerbate these problems, including autism.

The Environmental Protection Agency, under Administrator Lee Zeldin, is rolling back rules and regulations that will result in an increase in air pollution, which multiple studies have linked to autism. The agency is in the process of reversing bans on several chemicals, including TCE, one of the solvents associated with the disorder, and has told a federal court it won’t legally defend certain aspects of a ban on methylene chloride, another of the solvents linked to autism. It also began dismantling its Office of Research and Development, which has funded research into the environmental conditions contributing to autism. According to an EPA spokesperson, more than 2,300 workers have so far elected to leave the agency through Trump administration programs encouraging early retirement and resignation.

The EPA also began canceling grants, including one it had given to Schmidt, the researcher who studied the protective effect of folic acid. Schmidt had been awarded $1.3 million to determine whether air pollution from wildfires might increase the risk of various neurological conditions. Schmidt and her colleagues had just done preliminary analysis and found that there was a significant association between wildfire pollution exposure and autism when she received a letter saying that the grant was terminated because the project was “no longer consistent with EPA funding priorities.” After a judge ruled in a class-action lawsuit on behalf of University of California researchers alleging their funding was unlawfully terminated, her grant was reinstated last month. But the EPA has appealed the judge’s ruling, leaving Schmidt unsure about the fate of the project.

Schmidt said there is an urgent need to finish the study and warn people about how to avoid the dangers from wildfire smoke by staying indoors and using air filters and N95 masks. “Millions of pregnant women are getting exposed as we speak,” she said.

Meanwhile, Kennedy has presided over his own gutting of research. Known for sharing videos of his bare-chested workouts, he likened his agency’s cuts to getting rid of “unhealthy fat,” but his plan to reduce the staff of HHS by 20,000 amounts to slashing the workforce by roughly a quarter, including veteran scientists. Among the divisions Kennedy eliminated was one that studied air quality and collected data on chemicals found in human blood. Some workers in the division were subsequently reinstated. After a lawsuit and pressure from Congress, HHS has also rehired some NIOSH workers, though none at the division where McCanlies worked. Those whose jobs have not been reinstated remain on administrative leave.

The reorganization plan for HHS involves consolidating the remnants of these parts of the agency, along with several others, into a new division called the Administration for a Healthy America. Asked about the transition, an HHS spokesperson told ProPublica in an email that the reorganization would save taxpayers $1.8 billion a year and that “critical programs will continue.”

Meanwhile, a ProPublica review of federal data found that more than $40 million in grants awarded by the National Institutes of Health for dozens of autism-related research projects were canceled under Kennedy’s watch. Some had been awarded to universities the administration is now targeting, while others ran afoul of Trump’s “anti-woke” priorities by mentioning gender and other verboten terms. Among them was a grant to Harvard University to use data on nearly half a million Israeli children to evaluate whether men’s exposure to air pollution affects the risk of having a child with autism. (A small number of grants have been recently reinstated.) A survey of researchers conducted by the Autism Science Foundation, which tallied cuts to training grants and the anticipated cuts to future grants over the next few years, estimated that the total loss of funding could be tens of millions more.

“We’re talking about probably decades of delays and setbacks,” said Alycia Halladay, chief science officer at the Autism Science Foundation. “To take money away from all these areas of need to focus on a question that the HHS director considers high priority seems not scientific and not the way that science is done.”

Housed under the National Institutes of Health, Kennedy’s new $50-million Autism Data Science Initiative is looking to fund two- to three-year research projects that plumb large public and private datasets to find “possible contributors to the causes of autism” as well as conduct research on existing treatments.

With the deadline for his promised discovery fast approaching, Kennedy recently acknowledged that his initial six-month timeline was overly optimistic. He told Carlson he should have “some initial indicator answers” about the causes of autism by September, his original deadline, and promised unqualified answers within another six months.

While the NIH typically releases the names of the scientists on the committees that review grant applications and the criteria they use to review them, it has not done so in this case. Nor has the agency clarified what role NIH staff will have in awarding the grants, who will make the final selection, or what terms and conditions researchers must agree to if they receive funds. HHS did not respond to ProPublica’s questions about who will make the final grant selection and why the agency has not yet made this information public, but a video NIH created for applicants of the funding acknowledges that reviews of the proposals “do not follow the traditional NIH review process.” According to the video, the process was “designed to ensure integrity, fairness and transparency.”

Hertz-Picciotto, who laments the fact that Kennedy is “shutting down good studies,” is among the researchers in her field who have decided to apply for the funding. “Some of his agenda is really ridiculous and very counterproductive,” she said. “But if something good can be done with this money, I’d like to be part of that.”

If her project is approved, she plans to hire McCanlies to consult on it.

McCanlies said she agreed to work on the project because she has complete confidence in her longtime colleague, if not the health secretary. “I don’t trust him at all,” she said.

McCanlies had never paid much attention to Kennedy — or to politics. Throughout the seven presidential administrations that governed while she had been at NIOSH, her work had been utterly uncontroversial. But weeks after his confirmation, she knew her job was in peril. She had deleted the first email she received from Trump’s Office of Personnel Management. The tone was so strange and disrespectful, hinting that she might be punished if she didn’t respond by confirming her email address, that she assumed it was a phishing attempt. By the time she received a second, suggesting that she find a “higher productivity” job in the private sector, firings and budget cuts were rolling across federal agencies.

The 58-year-old, who has short, greying hair, hazel eyes and three graduate degrees, hadn’t been ready to leave NIOSH’s Health Effects Lab in Morgantown, West Virginia, a place where she had mentored young colleagues, taught a lunchtime meditation class and helped conduct several yearslong research projects. The lab is also where she met Fred, her husband, another Ph.D. scientist who studied workplace chemical hazards. She reluctantly put in for early retirement just days before the entire lab was dissolved.

McCanlies spent her final days at NIOSH finishing her last paper, which explores the association between workplace chemicals and the severity of autism. Normally, she would have her supervisor sign off on her submission to a journal, but he had already lost his job. The rest of her colleagues were gone, too, and the lab’s hallways were empty as she gave the manuscript a final edit.

She felt proud of the study, which answered some of the questions she and Hertz-Picciotto had posed years ago. There were indeed links between exposures and the severity of autism. Parents’ exposure to plastics was “consistently and significantly associated” with lower cognitive scores in their children who had autism, increases in “aberrant behaviors” and deficits in basic life skills, the study found. The exposure was also linked to particular symptoms of autism, including social withdrawal, hyperactivity and repetitive behaviors such as hand flapping and body rocking. Higher autism severity scores and weaker daily living skills were also linked with ethylene oxide. Last year, the EPA imposed stricter limits on the chemical, which is used as a sterilizer. But the agency is now reconsidering those restrictions, and, in July, Trump exempted some of the biggest polluters from them.

The paper, which is now available as a preprint, recommended that regulatory agencies “consider increasing awareness of these hazards and make clear recommendations for implementing protective measures at the worksite.”

Having just watched so many occupational health experts forced to leave their jobs, McCanlies suspected their advice was unlikely to be heeded anytime soon.