U.S. Requests to Access Africans ‘ Data Raise Privacy and Sovereignty Problems

Frank Ssekamwa says the United States presented his land with an difficult decision. Uganda would have to grant the United States access to the data of millions of his own citizens if it accepted the terms of a new health contract, which he worries may make their private information more susceptible to breaches and potential exploitation.

But if it refused, the South American country would probably lose out on more than a billion dollars to tackle HIV, dengue, disease and other ailments, even as its people face ongoing threats from Ebola and other dangerous infectious diseases.

But, on Dec. 10, it agreed.

” If you take the offer, you’re going to get exploited,” he said. If you don’t get it, you’re going to die”, said Ssekamwa, an attorney and digital rights expert in Uganda. It’s” the very definition of modern colonialism”

Across Africa, countries have faced similar difficulties as the U. S. has held a series of closed-door conversations in which saving support has been conditioned on access to citizens ‘ health data. The negotiations come in the midst of the dismantling of the U. S. Agency for International Development, which — in comparison with the new arrangements — provided billions of dollars in aid with some strings attached. Officials in Zambia, Zimbabwe, and Ghana have rejected the initial agreements because they have been so upset by the demands.

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. Secretary of State Marco Rubio stated in September that an aide will now be provided “in a way that directly benefits the American people and directly promotes our national interest.”

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. A data-sharing agreement with Uganda that has not previously been reported, a data-sharing agreement with Kenya, six agreements that the State Department made public regarding the sharing of pathogens that can lead to pandemics, generic templates for sharing both data and pathogens that can lead to pandemics, and an analysis of the documents Public Citizen’s exclusive communication with ProPublica were also reviewed by 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. They were unable to identify every vulnerability without reviewing the entire suite of agreements. 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.

For seven years, the United States will have direct, real-time access to nine of the country’s health data systems, including the central repository where all of its health information is kept, lab data, data collected by community health workers, and, crucially, its system for managing individuals ‘ electronic medical records. The agreement calls for the sharing of aggregated data with all personally identifiable information removed. Additionally, it recommends that the data 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.

Under President Joe Biden, Stephanie Psaki, the administration’s representative for global health security, referred to the move 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.

The United States will invest up to$ 1.7 billion in Uganda for the prevention of malaria, tuberculosis, HIV, and polio, as well as global health security and the treatment and prevention of deadly diseases. 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. According to an analysis by Vincent Lin of Partners in Health, which provides healthcare in poor countries, 45 % less global health funding will be given to the African nation by 2030 than when Trump retakes office.

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. However, they worry that the approach’s transactional nature could backfire by undermining trust or, in some cases, forcing nations to completely reject deals.

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. Additionally, some nations have signed separate pathogen-sharing agreements that require nations to “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 informed ProPublica that it requires access to the data in order to protect Americans and improve health outcomes in the countries where it is distributed. 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 considered a number of factors to make sure the necessary investments from other nations were “realistic and realizable.”

” The United States is investing billions of dollars in other countries ‘ health systems to fight infectious disease. In exchange, we anticipate that governments will increase their own health spending, making sure that programs remain viable and fall under genuine national ownership rather than being permanently funded by American 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. Sharing of data is done in accordance with the laws and regulations of each nation. No personally identifiable information is being received or shared by the United States government”.

The Ugandan ministries of health, foreign affairs, personal data protection office, and embassy in Washington, D.C., did not respond to inquiries 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 <a href=”https://www.stout.com/en/insights/article/mining-healthcare-gold-value-healthcare-data”>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 value of the industry that purchases and sells these information troves is in 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.

The State Department’s stated goal is to “promote American health innovations” and “more prosperous” America, but the agreements do not guarantee that the Africans who are 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 International 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“. Countries that hosted COVID-19 vaccine trials just a few years ago, including some in Africa, only to find it difficult to access the shots they helped develop.

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

After the Trump administration completely demolished USAID, the largest humanitarian aid organization in the world, it also drastically decreased funding for Centers for Disease Control and Prevention’s international health efforts and severely reduced the President’s Emergency Plan for AIDS Relief, which fights 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. Smith founded three businesses before he became president, including CareBridge, a home care company that sold for a reported$ 2.7 billion in 2024, with business models based in part on data-use to lower healthcare costs. During the presidential transition that year, Smith led the government efficiency panel that would become Elon Musk’s Department of Government Efficiency. Before being hired as an adviser to the State Department, he presided over some$ 67 billion in sweeping cuts to the Department of Health and Human Services after taking office.

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.

Smith, a Rhodes scholar renowned for his valiant work ethic, put his weight in the effort. State Department staff fielded calls from him at all hours of the night to explain budget items on spreadsheets. Smith referred inquiries to the State Department through his personal attorney.

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 across nations. 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. According to U.S. officials, the new strategy will allow the country to continue to audit programs and monitor 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”. According to Abdoul Jalil Djiberou Mahamadou, a recent postdoctoral fellow focusing on bioethics at Stanford University, the country’s main health agreement doesn’t require the U.S. to limit the amount of data it takes to the least necessary, a standard clause in U.S. contracts. ( Neither Liberia nor the State Department has released the supplemental data-sharing agreement. ) It’s nearly impossible to get data back once it has been breached, Mahamadou continued.

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”.

There are significant issues that the Ugandan government hasn’t addressed, according to Ssekamwa, the digital rights expert who also founded and runs the African Centre for Digital Justice.

” Does the U. S. have appropriate data protections? Can the systems provide data that is anonymous? Are they really up to that standard”? said Ssekamwa. Can you refuse me a visa because of the health issues I’m having if I’m someone who has had health issues?”

Psaki, the former global health security coordinator, worried about the haste with which the changes to data access are happening. You can’t go from having parallel data systems established over the course of more than 20 years to integrating those data systems in six months, even in the best of times.

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 trying to persuade dignitaries to agree to deals while traveling across the African continent with a small team of negotiators.

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

During a triumphant celebration with Rubio and President William Ruto in Washington on December 4, Kenya became the first nation to sign. 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.

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

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.

The Kenyan government argued in court documents that it is required to achieve the “highest attainable standard of health” and that it is unable to do so alone. After blocking the deal for months, in May, the Kenyan court temporarily allowed implementation of the agreement to proceed while it considers the case.

Some other nations have negotiated shorter terms for sharing data and pandemic specimens and have inserted additional protections since the public opinion has soared in Kenya, 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.

Wherever someone has been exposed to sexually transmitted disease, mental health condition, substance use therapy, or abortion, can be devastating. In Africa, research has shown it can lead to discrimination and violence. And even after the removal of personal information, people can still be identified using other 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. We are skeptical that the government of Uganda will actually have any power to control the data once it leaves Uganda,” 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 that it will release them once negotiations with all of the partner governments are over. Its actions are described 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.

If they believe the terms of the agreement are acceptable, why are they hiding it? 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. The Nigerian government did not respond to questions from ProPublica, and that lawsuit is still pending.

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. However, its laborious and secretive negotiations may ultimately go against those objectives.

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. Officials in Zambia also objected to U.S. demands for crucial 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.

Psaki, who cited the quickly escalating number of Ebola cases in the Democratic Republic of Congo as evidence, said,” It’s in everyone’s interest to have a comprehensive approach to respond to an outbreak early.” 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 effectively collaborate on that outbreak, and we don’t have that right now.”

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 take advantage of the fruits of big data and the advancements in technology,” he said. Instead, he said,” the U. S. has left so many gaps within the agreement, which can be exploited in their favor”.

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