In the Press

The Privacy Act—passed in 1974 partly as a response to the infamous Federal Bureau of Investigation (FBI) COINTELPRO surveillance program—restricts the sharing of personal information between government agencies. However, “the options for challenging the changes the bill makes to Medicaid’s data sharing setup would be limited, especially in terms of litigation,” said Nicole Schneidman, technology policy strategist at the advocacy group Protect Democracy. It makes “any effort to push back on this quite aggressive collecting of information much, much more challenging.”

“Every week we’re seeing new examples of this administration demanding or sharing sensitive government data for unprecedented uses,” said Nicole Schneidman, who heads the technology and data governance team at Protect Democracy, a nonprofit legal center that describes its mission as “defeating the authoritarian threat.” Schneidman said Americans should understand “the data that they have entrusted to state governments right now is truly a target.”

“Once this kind of data is in the wrong hands and in particular is aggregated, it can be used for an incredibly broad ranging set of purposes,” Schneidman of Protect Democracy said. “It is critical for every American to understand there is no ‘undo’ button here.”

Orion Danjuma, counsel with Protect Democracy, said in a statement that the ruling was “disappointing but not final.”

“We remain confident in the strength of our claims and will continue to pursue every legal avenue to protect academic freedom and the rule of law,” Danjuma added.

Kenneth Parreno, a Protect Democracy attorney arguing for the plaintiffs in that case Monday, maintained the Administrative Procedure Act requires the NIH to make decisions on grants in a reasoned away, while the “record shows a slap-dash decision making process,” including a series of emails in which NIH leadership took “just minutes” to make a decision on grants affecting “hundreds of researchers and millions of lives.”

“The directives themselves are explicitly spelling out a process where HHS is directing and identifying these terminations, that NIH officials are, in turn, just rubber stamping them, not providing any review,” Parreno said. “What this is is a slap-dash, harried effort to rubber stamp an ideological purge.”

“We are really gratified that we have a judge who has taken a fair look at the record and come to the very clear conclusion that NIH and the defendants have acted unlawfully in terminating these grants based on ideological grounds and not based on science,” said Shalini Goel Agarwal, special counsel at Protect Democracy, an advocacy group representing the plaintiffs in one of the cases.

By terminating the grants, the Trump administration was effectively declaring that certain groups of Americans are not worthy of having their health studied, Agarwal said. It is part of “a pretty ugly history that the judge is rightly calling out as wrong and fundamentally unlawful.”