Funding and Defunding of NIH Research Should Be Based on Real Science and Not Politics or Amorphous Constructs

The current presidential administration and leadership of the Department of Health and Human Services (HHS) have dramatically redefined what is considered allowable and valuable federally sponsored research. Since January 2025, thousands of grants from the National Institutes of Health (NIH) and the National Science Foundation have been terminated, rejected before review, or delayed. The reasons for these actions are often opaque. Following, for example, is the verbatim language that appeared in a “termination letter” sent to two of the authors as well as many of our colleagues:

Effective with this Notice of Award, this project is terminated. It is the policy of NIH not to prioritize research programs related to DEI. Research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness. Worse, so-called diversity, equity, and inclusion (“DEI”) studies are often used to support unlawful discrimination on the basis of race and other protected characteristics, which harms the health of Americans. Therefore, it is the policy of NIH not to prioritize such research programs. Therefore, no additional funding will be awarded for this project, and all future years have been removed (F. L. Cross, PhD, email to K. Resnicow, PhD, May 12, 2025; S. Naar, PhD, e-mail to K. Resnicow, PhD, March 21, 2025; K. E. Gamarel, PhD, email to K. Resnicow, PhD, March 24, 2025).

Defunding letters note “amorphous” objectives that are “antithetical to the scientific inquiry” that “do nothing to expand our knowledge of living systems.” Ironically, these criteria seem themselves a bit amorphous and lacking rigor. Letters inform grantees that their research “no longer effectuates the program goals or agency priorities” (F. L. Cross, email to K. Resnicow, PhD, May 12, 2025; S. Naar, PhD, e-mail to K. Resnicow, PhD, March 21, 2025; K. E. Gamarel, PhD, email to K. Resnicow, PhD, March 24, 2025).

The provided quote is from one of the DEI form letters. Variations of these defunding letters have similarly been used to terminate grants related to lesbian, gay, bisexual, transgender, and queer (LGBTQ+) health disparities having little to do with DEI. Reasons cited include unscientific views of “gender identity,” lack of an “identifiable return on investment,” and “ignoring rather than seriously examining, biological realities” (letter from NIH to K. E. Gamarel, PhD, March 20, 2025). To retain NIH funding, investigators have been asked to exclude transgender participants or eliminate gender identity measures. Beyond DEI and LGBTQ+ (as well as HIV) research termination letters, one of the authors (K. R.) had an NIH-funded vaccine study defunded because it “attempts to influence the public’s opinion” (letter from NIH to E. Marsh and K. Resnicow, May 9, 2025). Could not every behavioral intervention arguably be tarred with the same brush?

DEFUNDING DISPARITY RESEARCH

Of note, many grants have been defunded despite having little to do with DEI. This includes projects focusing on health disparities. Disparity research, a major focus of public health research, seems to have been swept up into the dismantling of DEI.

The rationale for defunding disparity science is further articulated by NIH director Jay Bhattacharya, in a May interview in Politico Magazine (http://bit.ly/48jTIVI):

The second principle is that we want to focus on real scientific ideas that actually improve health. So, I want to distinguish that from ideological constructs like DEI that in many ways are not even in principle falsifiable. If you believe structural racism is the primary reason why minorities are in lower health, how would you disprove that? What experiment could you do to disprove that? If you can’t think of an experiment to disprove something, then that’s not a scientific idea.

There are a few flaws in this argument. First, it seems to conflate DEI programs with those studying health disparity and health equity, particularly studies on structural racism. And second, this position seems to ignore the large body of rigorous correlational and intervention research in this space—“real science” that has narrowed racial and ethnic gaps in life expectancy and other health outcomes.^1,2

Let us return to the first issue. DEI and health disparity and health equity research are distinct domains. DEI refers to organizational practices that promote full and fair access to jobs and education, equitable treatment, and a sense of belonging for all people—not only in hiring, promotion, retention, and termination but also across institutional culture, policies, and systems. In contrast, health disparities is a scientific discipline within social and medical science, which according to the National Institute on Minority Health and Health Disparities (NIMHD; http://bit.ly/4nVfzrl) entails

largely preventable health differences that adversely affect populations who experience greater challenges to optimal health and are closely linked with intergenerational social, economic, and/or environmental disadvantages—primarily based on identification as an individual from a racial and/or ethnic minority group and/or by low socioeconomic status (SES) in society.

Health disparities may be observed in the risks, prevalence, or problems resulting from specific behaviors, as well as the incidence, prevalence, and mortality from conditions, diseases, and/or disorders. Health disparities also can be observed in health care access, quality, and utilization, and within the delivery of clinical care.

BENEFITS OF DISPARITY RESEARCH

For more than 20 years, the NIH has prioritized disparity research through various mechanisms including targeted funding opportunities announcements, minority supplements, and training grants. These activities were largely bipartisan. Investigators were required to recruit diverse samples. Disparity research is not only about race and ethnicity but also includes underserved rural residents (from all racial and ethnic groups), sexual and gender minority people, and, more recently, individuals with disabilities. Moreover, disparity is generally studied through an intersectional lens that considers the interaction of social determinants and identity(ies) and examines how interlocking systems of power create and sustain health inequities.³

Race and racism, both interpersonal and structural, remain key drivers of health inequities.^3,4 While we have made considerable progress, racial and ethnic health disparities continue to harm families, harm the economy, and harm America. From 1999 through 2020, an estimated 997 623 excess deaths occurred among US Black males and 628 464 excess deaths among US Black females relative to their White counterparts—accounting for around 1.63 million excess deaths. This equates to more than 74 000 Black people dying unnecessarily each year.⁵ These excess deaths equal 47 million and 35 million excess years of potential life lost among Black males and Black females, respectively.⁵ Large and persistent inequities in health are evident for American Indians and Alaska Natives as well as Hispanic Americans, albeit in patterns somewhat different than those for Black Americans.^6–9

The economic burden of racial and ethnic health disparities in the United States is immense, more than $400 billion annually.⁹ Closing the racial equity gap in the United States would save $135 billion annually from reduced health care costs ($93 billion) and improved productivity ($24 billion). A healthier workforce spends more, pays more taxes, and uses fewer safety net services and resources.¹⁰ Reducing the racial gap in health, education, incarceration, and employment would generate an additional $191 billion spent on food, $500 billion on housing, $52 billion on apparel, $259 billion on transportation, and $77 billion on entertainment each year. Federal tax revenues would increase by $450 billion, and state and local tax revenues would increase by $100 billion annually.¹⁰ Equity will improve conditions for everyone, including many poor and working-class White Americans.

Disparities are also costly in terms of social impacts.¹¹ For example, Black children are three times as likely to lose a mother by age 10 years and twice as likely to lose a child by age 30 years and a spouse by age 60 years. Immigrants and their children have high levels of stress that impacts their health.¹²

Another cornerstone of the defunding rationale is that topics such as structural racism (and presumably other disparity and equity research) are not worthy of NIH funding because they are not falsifiable by any single “experiment.” This is a red herring. It is the sum of disparity and equity research that provides proof of concept, not any single study. The effects of structural and interpersonal racism have been rigorously examined.^2,13–16 Moreover, culturally tailored interventions have been studied through randomized trials.^17–20 This includes studies that experimentally isolated the impact of cultural tailoring and racial message framing.^17,18,21,22 Furthermore, mediation analyses or causal modeling can be used to understand the psychological and behavioral mechanisms through which disparity and equity interventions work.

Consider the observation that access to health care is a major determinant of health outcomes. Yet, no single study can prove or disprove this. So, too, self-efficacy is a major determinant of behavioral outcomes, but again, no single study can prove or disprove it. Does that mean these topics are not worthy of federal research?

Robust cohort studies such as the Jackson Heart Study, the Black Women’s Health Study, the Multi-Ethnic Study of Atherosclerosis, the Multiethnic Cohort Study, Chicago Health and Life Experiences of Women, and RADAR Cohort Study, as well as individual studies, have produced an impressive array of publications documenting the impact of racism, discrimination, segregation, identity, and social determinants on health outcomes.^2,9,15,23,24 We have learned that race is an independent predictor of health outcomes, not just a marker for lower socioeconomic status.²⁵ This is an important scientific matter, not a political or DEI issue.

There are legitimate criticisms of disparity research, including an overemphasis on describing the problem (correlational research) and not enough research to fix the problem (intervention research). And, similar to other research domains, not all disparity research is adequately rigorous, reproducible, and beneficial. We should take this opportunity to raise our standards and focus more on solutions than problems. We welcome an opportunity to work with our federal partners to improve the quality and impact of the disparity research they fund. However, throwing out this entire domain of research because of its putative connection to DEI seems to be tossing the baby with the bathwater.

Interestingly, cultural tailoring, a foundation of equity interventions,¹⁹ is standard practice in corporate America. It is essentially a form of audience segmentation and target marketing. Virtually every industry, from automobiles and food to insurance and alcohol, uses targeting and audience segmentation strategies to determine where they advertise and how they frame their appeals. Subaru has famously targeted sexual minority women with tongue-in-cheek ads focusing on getting “out” and about while McDonald’s employed the Williams sisters for the “365” campaign targeting Black Americans. Tailoring appeals to cultural values, beliefs, and practices is “usual care” in corporate America. It would be sad if it were prohibited at HHS.

NEXT STEPS

Documenting the adverse effects of racism and discrimination and designing studies to ameliorate their insidious effects should be prioritized at NIH, not canceled.

We ask our new leaders at HHS and NIH to collaborate with the disparity research and practice communities to advance high-quality, high-impact research. Despite decades of bipartisan support for health disparity research, there are few, if any, binding statutory protections to prevent politically motivated grant terminations and funding reallocations. Regulations to prevent any future dismantling of public health research are needed. Strengthening federal science governance—including codifying protections for priority research areas, establishing independent review bodies, and formalizing fair and transparent appeals processes—is essential. The NIMHD should be protected and adequately funded. Without systemic reform, long-standing public health priorities will remain vulnerable to the shifting ideologies of those in power. The fact that several of the authors’ previously terminated grants have been recently reinstated is encouraging. Nonetheless, the terminations, even if reversed, have significant adverse consequences.

We welcome our new leaders’ emphasis on using a data-driven approach and their desire to improve health outcomes. We believe the public health community can help in this regard. Replicable, rigorous research on race, racism, discrimination, and disparity will save lives, boost our economy, and improve life for all Americans. Let us finish the work we have started.