By Sharon Lerner and Anna Maria Barry-Jester, ProPublica
This story was originally published by ProPublica.
What Happened: Citing reporting by ProPublica, eight Democratic U.S. senators have criticized the Trump administration’s demands to access the health data of millions of people as a condition of giving lifesaving aid to other countries. In a letter to Secretary of State Marco Rubio, the senators, including minority leader Chuck Schumer, said the U.S. demands were “unprecedented and at odds with U.S. policy concerning the data of American citizens.”
The inquiry into the administration’s approach to foreign health data referred to a ProPublica story published in June about agreements the U.S. struck with African countries and the risks they posed to people there. Experts told ProPublica that the deals are vague and lack language used in most data-sharing agreements to adequately limit what information is collected and how it can be used.
The senators, who include Tim Kaine of Virginia, Chris Van Hollen of Maryland, Brian Schatz of Hawaii, Amy Klobuchar of Minnesota, Christopher Coons of Delaware, Jeff Merkley of Oregon and Raphael Warnock of Georgia, who led the effort, requested a briefing on the healthcare agreements’ data requirements and asked Rubio to respond in writing to a list of questions by the end of August.
What They Said: In the letter, sent last week, the senators expressed concern that the requirement to access foreign health data might reverberate beyond the countries where the aid agreements were struck and “set international precedents that ultimately harm Americans.” They noted the demands appear to be at odds with the Trump administration’s National Cyber Strategy, which emphasizes the right to privacy for Americans and their data.
“These new demands set an alarming precedent that is seemingly contrary to the Administration’s longstanding support for the privacy of U.S. citizens’ data,” they wrote.
The senators also laid out details of a data-sharing agreement between the U.S. and Uganda that were first reported by ProPublica. The deal demanded that Uganda provide the U.S. and its contractors with logins “or other secure access mechanisms” to directly enter the nation’s health data systems.
Background: After the Trump administration dismantled the U.S. Agency for International Development and drastically reduced funding for international health work done by the Centers for Disease Control and Prevention, Congress required the executive branch to continue providing foreign aid. The task has been especially challenging because the administration cut ties with most international partners and fired staff the government had previously relied on.
The U.S. agreement with Uganda provides up to $1.7 billion in aid for HIV, tuberculosis and malaria, among other diseases. As a condition, the deal calls for sharing of aggregated data with all personally identifiable information removed, but experts told ProPublica it is possible to reverse-engineer data that has been anonymized.
Why It Matters: Privacy experts say that if health data is mishandled under the agreements, it could have serious consequences. Revealing healthcare histories, including whether someone has had an abortion, a mental health condition, substance-use treatment or a sexually transmitted disease, can be devastating anywhere.
Response: The State Department declined to answer specific questions about the senators’ letter, saying it does not respond to questions about congressional correspondence. In a statement, a State Department spokesperson said neither the U.S. government nor any private American companies receive or review any personally identifiable information under these data sharing agreements, and that no country has been coerced to sign the agreements with the U.S.
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