As an undergraduate researcher at the University of Pennsylvania, I spend my time outside of class studying how a protein called tau destroys the brain cells of Alzheimer’s patients. This research happens at Penn’s Center for Neurodegenerative Disease Research (CNDR), it is funded by the National Institutes of Health, and it is the reason I want to spend my life as a physician-scientist.
It is also exactly the kind of research a new federal proposal could quietly undermine.
On May 29, the White House’s Office of Management and Budget (OMB) published a 100-page proposed rule that would fundamentally restructure how the federal government administers research grants. The comment period closes July 13.
Most Americans have never heard of it. That needs to change.
The rule has several alarming impacts. For instance, it would allow political appointees to override scientific peer review in grant decisions, upending the meritocratic, rigorous system that has pushed American science forward since World War II.
Perhaps most critically, it would permit the government to terminate any active federal grant at any time, for any reason — including the vague, undefined justification that a study is no longer in the “national interest.” Furthermore, it would effectively ban federal funding for research into health disparities across racial populations, with a stated exception so narrow it is meaningless in practice.
Let me put that in perspective with specific examples. Over seven million Americans currently live with Alzheimer’s disease, and that number will nearly double by 2050. The research that underpins our understanding of this disease — including discovery of biomarkers, assembly of databases, and clinical trial frameworks — took decades of sustained, longitudinal federal investment to build. The Alzheimer’s Disease Neuroimaging Initiative, launched in 2004, required over 20 years of continuous funding and investment prior to producing any comprehensive datasets that now drive clinical trials.
Under the proposed rule, however, a political appointee or administrator with no scientific background could have decided at any point in that 20-year window that the study was no longer in the “national interest” and ended the study. The harm this vague, sweeping rule would do is not hypothetical. Much biomedical and clinical research, including in the field of neurodegenerative diseases, is longitudinal, and progress is not always immediately visible.
I’m reminded of what the late John Trojanowski, a former leader of the lab I now work in, said in regard to his research on the proteins behind Alzheimer’s:
“We asked our mentors, ‘Is this something we should do?’ They all said, ‘No. It’s a swamp, and you’ll ruin your careers because so little is known.’ What they saw as a swamp, we saw as a huge challenge and opportunity that has led to an engaging career.”
Trojanowski’s partner in that research was Virginia Lee, whose work on tauopathies I have the privilege of contributing to today.
Their “swamp” turned out to be an oasis of discovery that likely would’ve remained untouched if these two experts in their field had not trusted in themselves and decades of training. If even their mentors — senior scientists in their own right — had dismissed these field-defining ideas, imagine the damage administrators and political appointees can inflict on similar revolutionary discoveries simply because they deem them “not in the national interest.”
The ban on research into racial disparities will compound this harm. Black Americans are diagnosed with Alzheimer’s at roughly twice the rate of white Americans. Population differences in disease risk, progression, and biomarkers are not ideological claims, but instead are observed, replicated findings in the scientific literature.
For example, research has found that the relationship between the APOE4 gene (a major genetic risk factor for Alzheimer’s disease) and brain pathology inherently differs across racial groups. More specifically, some studies have found different patterns of tau protein markers in Black and Hispanic populations compared with the predominantly white cohorts that comprised much of the foundational, preexisting literature.
As currently written, this provision reaches much further than OMB’s framing of eliminating unlawful DEI policies suggests, and instead directly threatens legitimate biomedical research.
From a student perspective, I also want to acknowledge something that institutional press releases may not: This rule falls hardest on the people least able to absorb the blow.
If a principal investigator or faculty member loses a grant, it is by all means a loss, but they are more likely to have tenure, salary, or institutional support. If a graduate or doctoral student loses a grant mid-project, they potentially lose their publication, graduation timeline, and may face an altered career trajectory. And yet, trainees are never once mentioned in this proposal.
So what can those of us who want to ensure we have the tools to effectively treat future pandemics and that our children benefit from world-class health research do?
Congress has little practical recourse here. The Congressional Review Act exists, but in the current political climate, a veto-proof majority to overturn an OMB rule is a fantasy.
Yet, our voice still matters.
I do not say this as a mere platitude. The Federal Register, where this document was published, contains a form for anyone to leave a comment for OMB. Unlike the “contact me” forms on senators’ and representatives’ pages that you rarely receive a response from, the comments here are public — and they also carry legal weight. When this proposal gets challenged in court — and it almost certainly will — judges will look at the administrative record, which includes every single comment.
If OMB does not meaningfully engage with a substantive objection raised during the comment period, that provides grounds to vacate the rule. Your comment doesn’t just go into a void. It becomes part of the legal ammunition.
Physicians and healthcare workers: Share the stories of your patients who benefited from federally funded studies. Scientists and students: Explain your research and the progress made from it. Attorneys and legal scholars: Challenge the principles and wording in this sweeping, overarching proposal.
To those whose careers do not directly involve science, this is your fight, too.
Comment on your medical condition that’s been treated. Chances are that treatment was only possible due to federally funded basic science. And if you or a loved one suffers from a disease or illness for which we do not yet have a cure, it is all the more important that you speak up with us.
Stable and comprehensive funding allows scientists to develop treatments for both rare illnesses and widespread ones like neurodegenerative diseases.
This is also a fight for our underrepresented racial and ethnic populations, the LGBTQ+ community, and the marginalized in our city. The decision to fund research on medical disparities is a decision to invest in the people who need it most.
As we in Philadelphia celebrate our nation’s Semiquincentennial, America’s first hospital and medical school, and the great scientific advancements of our city, it would be wrong not to recognize the benefit biomedical research has received from federal funding.
This legacy is now in danger. If we want to see another 250 years of great American science, now is the time to act.
Ayaan Shah is a sophomore at the University of Pennsylvania studying neuroscience and an undergraduate research assistant at Penn’s Center for Neurodegenerative Disease Research.
