Beyond the Checkbox: Rethinking Race in Modern Medicine

The most profound revolution in biomedical research isn't happening in a petri dish—it's in how we categorize the people in our studies.

Genetics Health Equity Research Methods

In 2025, a landmark government study revealed a truth that would reshape medical research: Americans' self-reported race is a poor proxy for their genetic ancestry. The National Institutes of Health's "All of Us" research program analyzed the genomes of over 200,000 participants and found that the racial categories long used in medicine don't align neatly with our DNA 7 . This discovery arrived amid a heated national debate about the role of racial categories in research, with major scientific bodies calling for a fundamental rethinking of practices that have persisted for decades.

For centuries, medical research has operated under assumptions about racial biology that are now being dismantled by both genetic science and a deeper understanding of society. As one researcher noted, "The clear message here is that these are two distinct constructs, they mean different things, and they should not be used interchangeably" 7 . This article explores how this paradigm shift is transforming biomedical research and what it means for the future of health equity.

200,000+
Participants in "All of Us" Study
99.9%
Human Genetic Similarity
2025
Landmark NIH Study Published

The Flawed Foundation: When Social Constructs Masquerade as Science

The completion of the Human Genome Project in 2003 revealed that humans are 99.9% identical at the DNA level and that race has no genetic basis 1 . Despite this, racial categories have continued to permeate biomedical research, often in problematic ways.

The fundamental issue lies in treating race as a biological variable rather than what it is—a sociopolitical construct. As the National Academies of Sciences, Engineering, and Medicine (NASEM) explained in their 2025 report "Rethinking Race and Ethnicity in Biomedical Research," this confusion begins with how we define these categories 1 3 .

Historically, race has been weaponized through "race science," which posited that humans could be divided into biologically separate groups with distinct physical and mental characteristics. Decades of genomic research have proven this false, showing that genetic variation among populations follows overlapping, continuous distributions rather than discrete racial categories 1 .

The Harm Isn't Just Theoretical—It's Practical

Sickle Cell Disease

Has been misrepresented as a "Black disease," despite affecting diverse populations from Afghanistan, Greece, India, and Turkey 1 .

Race-Adjusted Algorithms

For kidney function historically used different calculations for Black patients, potentially delaying specialist referrals 4 .

Medical Education

Has perpetuated false biological assumptions, such as beliefs that Black people have thicker skin or feel less pain 9 .

Research Funding Disparities

Sickle cell disease, racialized as affecting primarily Black populations, receives less research funding than cystic fibrosis, which has been labeled as primarily affecting White people 1 .

The Turning Point: A Crucial Experiment Exposes the Myth

The 2025 NIH study published in the American Journal of Human Genetics represents a watershed moment in this debate. Using the massive "All of Us" cohort—designed to better represent the U.S. population—researchers systematically compared self-reported race with genetic ancestry data 7 .

Methodology: Mapping Social Identity to Genetic Reality

The research team analyzed the genomes of more than 200,000 participants, creating one of the most comprehensive studies of its kind. Their approach included:

  • Collecting self-reported racial data using standard Office of Management and Budget categories
  • Genomic sequencing to determine actual genetic ancestry
  • Multiple analytical methods to compare how well social categories aligned with genetic profiles
  • Geographic mapping to understand regional variations in racial identity

One particularly revealing analysis used body mass index (BMI) to demonstrate the limitations of broad racial categories. Researchers found that those with West African ancestry were predisposed to higher BMI, while those with East African ancestry were predisposed to lower BMI—a distinction completely lost when both groups were lumped together as "African" in racial categorization 7 .

Comparison of Self-Reported Race and Genetic Ancestry

Self-Reported Race Genetic Ancestry Findings Key Implications
African American Varied proportions of West African, East African, and other ancestries "African" category masks important genetic diversity relevant to health
Latino/Hispanic Highly diverse genetic backgrounds with varying indigenous American, European, and African ancestry Socially defined group doesn't map neatly onto genetic ancestry
Asian Distinct genetic profiles for South Asian, East Asian, and Southeast Asian populations Lumping nearly 60% of world's population into one category masks disparities
White Considerable genetic variation across European subpopulations "Caucasian" category overlooks important population substructures

Results and Analysis: The Social Construction Laid Bare

The findings were striking in their consistency across multiple analyses:

Poor Proxy

Self-identified race proved to be a poor proxy for genetic ancestry across all categories

Regional Variations

Significant regional variations emerged in how people identify racially

Latinos Exemplify Complexity

Latinos showed diverse genetic backgrounds that don't align with uniform health risks 7

The study's lead author, Charles Rotimi, summarized the implications: "When we use concepts as broad as European or Africans or Asians, we distort our understanding of genetic variation, and that distortion can put individuals at risk when we try to prescribe medicine or when we try to treat them" 7 .

The Scientist's Toolkit: New Frameworks for Research

As the limitations of traditional racial categories become undeniable, researchers are developing more nuanced approaches. The 2025 NASEM report outlines several key tools and frameworks for improving biomedical research 3 6 .

Essential Conceptual Tools

Hypothesis-driven stratification

Ensures racial categories are used purposefully rather than by default. Pre-registering analysis plans that specify why race/ethnicity is relevant to the research question.

Community-engaged research

Incorporates lived experience and builds trust with underrepresented communities. Partnering with community organizations from research design through dissemination.

Transparent operational definitions

Clarifies what race/ethnicity categories actually measure in a given study. Specifying whether race data came from self-report, electronic records, or researcher observation.

Intersectional analysis

Examines how race interacts with other social factors. Analyzing how racism, socioeconomic status, and environmental exposures collectively influence health.

The NASEM report emphasizes that collecting race and ethnicity data remains important for monitoring health disparities and ensuring diverse representation, but requires "intentionality at every step of the research process" 9 .

Research Recommendations

Best Practices
  • Provide clear justifications for using racial categories in studies
  • Distinguish between descriptive and analytical uses of race and ethnicity
  • Avoid making causal inferences from correlations between race and health outcomes
  • Include multiracial and multiethnic people meaningfully in research 3 9
Expert Perspective

"Using race and ethnicity can be appropriate, but it's context dependent. If researchers are going to use race and ethnicity, they should be clear about why, and if they are using it to study health disparities, they should think about including other causes of that, such as racism or social determinants of health" 9 .

NASEM Committee Member

Signs of Progress: The Path Toward More Ethical Science

Despite the challenges, clear progress is emerging across the biomedical research landscape:

Policy and Guidelines
  • Recent updates to the AMA Manual of Style provide specific guidance for reporting race and ethnicity in medical literature 5
  • The Office of Management and Budget has added a "Middle Eastern or North African" category and encourages multiple selections 9
  • Journal editors and funders are increasingly enforcing standards for appropriate use of racial categories 5
Research Practices
  • A 2025 analysis of sickle cell disease research shows growing attention to how ethno-racial categories are operationalized 4
  • More studies are pre-registering their analytical plans, including hypotheses about racial differences, to reduce data fishing 2
  • Geneticists are increasingly using ancestry estimation instead of racial categories when biological differences are relevant 7
Cultural Shifts
  • The conversation has moved beyond simply "including" racial minorities to critically examining how categories are used analytically 6
  • There's greater recognition that removing race from clinical algorithms without addressing underlying biases is insufficient 9
  • Research on multiracial populations is expanding, reflecting demographic reality 6

Progress in Medical Literature

A 2025 analysis of ophthalmology journals found substantial nonadherence to reporting guidelines, with only 55.8% of articles properly distinguishing between race and ethnicity, and 12.6% still using the problematic term "Caucasian" 5 .

Proper distinction between race and ethnicity 55.8%
Still using "Caucasian" terminology 12.6%

Conclusion: Toward a More Nuanced Future

The debate over racial and ethnic categories in biomedical research is evolving from whether we should change our approach to how we will implement better methods. As the scientific community grapples with this complexity, what emerges is a more sophisticated understanding of human diversity—one that acknowledges the social reality of race while avoiding biological essentialism.

The ultimate goal is not to eliminate racial and ethnic data from research, but to use these categories more thoughtfully and precisely. As the NASEM report concludes, "Using race and ethnicity can be appropriate, but it's context dependent" 9 . By developing more nuanced frameworks, the biomedical research community can better serve both scientific truth and health equity.

The path forward requires collaboration across the entire research ecosystem—from funders and institutions to journal editors and individual scientists. As one researcher put it, "We're not saying this because we're a bunch of woke, leftist scientists, we are saying this because this is going to improve the science that we're doing" 7 . In the end, that better science will lead to better medicine for everyone, regardless of how they check a box.

Genetic Precision

Moving beyond broad racial categories to precise genetic ancestry

Health Equity

Ensuring research benefits all populations equitably

Better Science

Improving research methodology for more accurate results

References

References