I am a geneticist working on colon cancer. In my research, I try to incorporate a broad and diverse sample of people residing in the United States so we can more fully understand the challenges we face. Colon cancer, for example, is on the rise among young people. Across all age groups, Native and Black Americans have the highest rates, substantially higher than white Americans.
Health disparities are not only about race but also about class, with the two often operating in tandem. Individuals from the most socioeconomically deprived neighborhoods in the U.S. have a 31% higher risk of colon cancer than those in the most affluent neighborhoods. These stark disparities are driven by numerous systemic factors, not least of which are lifestyle and access to food.
In my research on how the genetic risk for colon cancer is modified by diet, I have made important discoveries about how fiber and fat metabolites synergize with genetics to affect risk for colon cancer; however, my ability to extend this work into serving populations most affected by this devastating disease is limited by chasmic gaps in representation in genetics studies.
Genomics studies that fail to collect this complex relationship between both a person’s environment and their lifestyle cannot provide a robust understanding of disease risk.
As of 2021, over 85% of genome wide association studies (GWAS) worldwide have been performed in European ancestry populations, compared to 6% in East Asian and a mere 1% in African ancestry populations. As a result, research on this topic, including mine, is bound to focus primarily on how diseases like colon cancer manifest in bodies of European ancestry, further amplifying health inequities.
We also know from previous research that both nurture (environment) and nature (genetics) – and how they intersect – are critical in shaping disease risk. Genomics studies that fail to collect this complex relationship between both a person’s environment and their lifestyle cannot provide a robust understanding of disease risk based on the diversity of genetics, social dynamics, and environments that shape health. Marginalized groups most impacted by disease are at particular risk for being further misunderstood.
Cuts to the National Human Genome Research Institute, which funds my research, and the forcing out of its director, Eric Green, make the future of such work uncertain.
Initiatives like the National Institutes of Health’s All of Us research program were created in an attempt to close these gaps, collecting genetic, health, and lifestyle data on hundreds of thousands of participants from diverse backgrounds in the U.S.
But All of Us lost 71% of its funding in 2025, a devastating blow to an important effort in diversifying genetics research. Cuts to the National Human Genome Research Institute, which funds my research, and the forcing out of its director, Eric Green, make the future of such work uncertain. (Green in particular was steadfast in his commitment to studying genomic and environmental diversity through support for initiatives like H3Africa, an initiative to study the genetic and environmental diversity of the most diverse continent, and the Human Microbiome Project.) One result is those of us applying for grants are forced to either obscure or completely abandon research projects that dare to center marginalized groups and their experiences.
Losing this funding will continue to widen the gaps in access to care, diagnosis, and surgery for colon cancer for people who already have reduced access to healthcare. Part of this problem is our broken healthcare system, which leaves many people in the U.S. uncovered and undiagnosed until it is too late, a problem bound to worsen in light of the Trump administration’s Medicaid cuts. However, these large structural changes cannot be reversed overnight. We need a multifaceted approach to fighting health disparities, which includes protecting research that ultimately serves diverse, underrepresented groups.
Geneticists can strategically reframe recruitment as being targeted to “all Americans” in order to continue the important work of generating deep genetic understanding of a diversity of people residing in the U.S.
Scientists must fiercely advocate for making our research more applicable to all. Proposed state-level policy measures like the California Institute for Scientific Research, a bill to counter sweeping NIH cuts, must prioritize research on people in the U.S. who have long been sidelined. Legislators behind such bills should explicitly set aside funding for such “woke” research (a “CalStaysWoke” initiative, perhaps), given how it is being disproportionately censured by the federal government. States that have the political momentum, such as those suing the Trump administration over its push to end diversity programs in public schools, should follow California’s lead and, in doing so, also prioritize minority health research being defunded by the current administration.
It is important to remember that governmental organizations are still funding science, albeit at a lower rate. Organizations like PEN America have published helpful lists of banned words that get grants flagged in this era of censorship. While the sheer ridiculousness of these banned words — from “bias” to “community” to “Black” — can make us feel hopeless, scientists should use such lists to navigate the new funding landscape. Geneticists can strategically reframe recruitment as being targeted to “all Americans” in order to continue the important work of generating deep genetic understanding of a diversity of people residing in the U.S.
Yes, it is frustrating. But this current moment is about fighting for science to serve and represent the people who need it most.
