When Science Stops Asking the Right Questions

Research on health disparities is being dismantled, and with it, the truth about who gets sick and why.

Grants studying racial disparities and minority health are being pulled. Research into how sex and gender influence disease is being canceled—including studies critical to women’s health. While a year ago, this would have sounded like some strange, dystopian future, it is now a reality.

The Department of Health and Human Services is maintaining a public list of terminated NIH grants. Many focus on health equity, race, or gender. The FDA has shelved Project Equity, a program that ensured cancer treatments worked across different patient populations. Two recent federal executive orders—“Ending Radical and Wasteful Government DEI Programs and Preferencing” and “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to Federal Government”—have triggered these changes by halting funding for research projects that in some cases are in direct opposition to these orders, but in other cases appear simply to have trigger words in their titles.

With respect to women’s health research generally speaking, it’s unclear whether some of the cuts were intentional or whether women’s health research has simply been caught in the blast zone. The website for the Office of Research on Women’s Health has been largely dismantled. The course I wrote on sex, gender and respiratory disease has disappeared and has yet to make a comeback. Paradoxically, the NIH requirement to include sex as a biological variable in trials and their policy requiring recruitment of women and minorities in clinical trials appear to still be in place.

Regardless of the decisions being made in Washington, science doesn’t become less important just because it’s no longer funded. Much of what we know about sex differences in disease—and how to treat them—relies on studies that explore the intersection of biology and gender. By defunding this work, we risk reversing progress in women's health as well as minority health. We can’t reduce disease burden if we stop asking who gets sick, why, and what systemic factors are at play.

What’s at Stake When We Stop Asking Who Gets Sick—and Why

Regardless of policy decisions, we cannot develop effective treatments if we ignore the ways biology, identity, and lived experience shape health. A few examples are in order.

Why Research on Gender Matters

In 1982, the Physicians’ Health Study was conducted to assess the benefits of aspirin and beta-carotene on cardiovascular disease and cancer, respectively. This was a landmark study — with over 22,000 participants — as it found that a low dose of aspirin (325mg every other day) could reduce the risk of myocardial infarction by 44%. The catch? All participants in the study were healthy male physicians, with the majority being white.

Why does this matter? In 1993, the Women’s Health Study was conducted to test the effects of low doses of aspirin on women and found that overall, aspirin did not significantly reduce the risk of cardiovascular events for women who had no prior history of cardiovascular disease. It did reduce risk of stroke, but only one sub-group — women over 65 — saw a significant reduction in the risk of a major cardiovascular event (including MI and stroke).

In the current era, we now take into account multiple factors including age, sex, and other personal risk factors to make decisions about who should use aspirin as primary prevention for cardiovascular events, but this is just one example that highlights why we need to study the effects of sex (a biological construct) and gender (a social construct that influences how individuals interact with the world) on health outcomes — because they impact health. The scientific community has long recognized sex and gender as two important factors that both contribute to an individual’s overall health. It is the intersection of sex, gender, and environment that shapes an individual’s risk for disease and affects how those diseases may manifest. Regardless of whether an executive order validates this intersection, it exists and we need studies that acknowledge this if we want to develop the best treatment for individual patients.

Race and Deaths from COVID-19

The COVID-19 pandemic highlighted many systemic issues. As expected with any pandemic, people in poverty were disproportionately affected. However, another unexpected culprit contributing to systemic inequalities emerged: the pulse oximeter.

Pulse oximeters are widely used to measure blood oxygen levels, and during the pandemic, they became a popular household gadget. Studies later revealed, though, that there was a difference in the accuracy of the pulse oximeter reading based on race. A study conducted by the University of Michigan found that Black patients were three times more likely to have low blood oxygen levels go undetected by pulse oximeters compared to their white counterparts. A discrepancy this large in a standard device that is commonly used for clinical decision-making has large implications. In this case, it means that for Black patients and others with darker skin tones, about 1 in 10 pulse ox readings were inaccurate. Considering the context of COVID-19, it is devastating to realize how many patients with darker skin tones were not given adequate supplemental oxygen due to unforeseen biases in healthcare.

Given the current political climate, it is likely that studies similar to the aforementioned will no longer be supported. This will make it impossible to address healthcare barriers that minorities face. Not to mention, cutting this research will also halt progress in mitigating chronic diseases, such as cancer. This is in stark contrast to RFK Jr.’s stated public health goals of ending the chronic disease epidemic and making America healthy again.

Race and Cancer Outcomes

In the U.S. there is an alarming disparity in those who get cancer. In women under 40, Black women have the highest incidence of breast cancer compared to all other races. Further, when considering women of all ages, Black women have a 38% higher breast cancer mortality rate compared to White women, despite having an overall 5% lower breast cancer incidence than White women. Indigenous American/Alaska Native women also have a lower overall incidence but higher mortality of breast cancer compared to White women.

While this data highlights breast cancer specifically, it is part of a larger trend of disparities in cancer mortality, with Native Americans bearing the highest mortality rates, followed by Black Americans.

“Cancer Stat Facts: Cancer Disparities.” National Cancer Institute: Surveillance, Epidemiology, and End Results Program, 2022, seer.cancer.gov/statfacts/html/disparities.html.

So why do some ethnic groups have worse cancer-related outcomes than other groups? There are several factors implicated in cancer incidence — such as poor diet, alcohol consumption, and obesity — many of which are results of socioeconomic factors. Poverty disproportionately affects some ethnic groups over others, and contributes to conditions that increase cancer risk. Additionally, certain racial groups are also not accessing care at the same rates. For instance, only 59% of American Indian and Alaska Native women and 67% of Asian women age 50-74 have had a screening mammogram in the past two years as compared to 76% of white women and 82% of Black women.

To complicate matters further, screening guidelines are changing far quicker than the medical field can keep up with. Once a group decides they need to enact any changes to screening guidelines, the process is LONG. First, physicians propose an update to a guideline document to their relevant medical society, and conduct structured reviews of the literature. Then experts need to meet, review the evidence, vote on recommendations and draft the final guideline. Often, this is submitted to a medical journal for peer review and then ultimately published. This process can take anywhere from one to five years.

What’s the point of mentioning all of this? Things are already complicated and flawed when it comes to addressing systemic issues in healthcare, BUT despite these flaws, we can at least tell who is being affected by something and in what ways they are being affected. Defunding programs that contribute to research on health disparities will only exacerbate the problems.

The Upshot

Equity in medicine isn’t a luxury — it’s how we promote health for all members of our community. If we don’t ensure that research includes everyone, that care reaches everyone, we will leave behind the very people who need these breakthroughs most. In healthcare, inclusion isn’t about ideology but rather patient outcomes. Science must serve all of us, not just some of us. We can’t fix what we refuse to see. And right now, we’re beginning to close our eyes to the very research that tells us who gets sick, why, and what can be done about it.

The unraveling of federal support for research on gender and race in health doesn’t just stifle science—it threatens to reverse decades of progress in understanding how disease behaves across different bodies and lived experiences.

We must keep showing up, advocating for inclusive research, pushing for policies that reflect the diversity of our population. The real danger isn’t just in the dismantling of research programs. It will be in the silence that follows.