Where Do We Go from Here?
Exploring the ethical and scientific considerations of using racial and ethnic categories to advance health equity without reinforcing harmful stereotypes
Imagine a world where your medical treatment is determined by the color of your skin rather than the specific biological or environmental factors most relevant to your health. This is the ethical and scientific tightrope that biomedical researchers walk every day when they incorporate racial and ethnic categories into their work.
For decades, medicine has grappled with a fundamental paradox: race is not a biological reality in the way once thought, yet racial health disparities are very real and demand scientific attention. The question facing today's researchers isn't simply whether to use racial categories, but how to do so responsibly in ways that advance health equity without reinforcing harmful stereotypes.
The stakes couldn't be higher. From heart disease to diabetes and COVID-19, significant health disparities exist among different population groups. Understanding these patterns is crucial for addressing them, yet the tools we use to categorize people can themselves become obstacles to good science and equitable care.
As geneticist Dr. Charmaine Royal once noted, "The challenge is to avoid throwing the baby out with the bathwater"—preserving the ability to study health disparities while abandoning outdated biological concepts of race 1 .
This article explores the delicate balance between these competing priorities and charts a path toward more responsible research practices.
Researchers often use race as a proxy for unmeasured factors—a practice that can lead to imprecise science.
Racial categories may crudely represent:
Racial categories remain valuable when:
As one analysis notes, "In health disparities research... the 'race' variable is appropriately treated as a combination of biological and social factors" 1 .
Early scientific approaches treated race as a biological classification system with distinct categories.
Revealed that humans share 99.9% of genetic code, with more variation within than between racial groups 2 .
Race is recognized as a social construct with biological consequences, not a biological reality itself.
One compelling example of both the promises and pitfalls of using racial categories comes from pharmacogenetic research on the CYP2D6 gene, which affects the metabolism of approximately 25% of commonly prescribed drugs 1 .
Researchers conducted a multi-ethnic comparative study examining the distribution of CYP2D6 genetic variants across different populations.
The findings revealed complex patterns that challenged simplistic racial explanations:
| Population Group | Poor Metabolizers | Ultra-Rapid Metabolizers | Key Geographic Variations |
|---|---|---|---|
| European Descent | 5-10% | 1-2% in Sweden | North-South gradient observed |
| Japanese Descent | ~1% | Not reported | Less regional variation |
| Northern Spanish | Not specified | ~10% | Higher ultra-rapid frequency |
| Ethiopian Descent | 1-3% | 10-30% | Highest ultra-rapid frequency |
The data revealed that while broad group differences exist, the variation within groups was often as significant as variation between them.
Most importantly, the study demonstrated that knowing an individual's specific genetic variants provided far more precise guidance for medication dosing than relying on broad racial categories. As the authors noted, "Pharmacogenetic testing will not eliminate the need for careful clinical monitoring of adverse drug reactions," but it represents a move toward more personalized medicine 1 .
The CYP2D6 study reflects broader patterns in human genetic variation. Multiple large-scale genetic analyses have produced consistent findings about human diversity:
| Genetic Pattern | Scientific Finding | Research Implications |
|---|---|---|
| Within-Group Diversity | 85-95% of genetic variation occurs within geographically defined populations | Assumptions of group genetic uniformity are scientifically inaccurate |
| Between-Group Differences | Only 5-15% of genetic variation distinguishes continental groups | Racial boundaries do not align with sharp genetic divides |
| African Diversity | Highest genetic diversity exists within African populations | Supports "Out of Africa" model of human migration |
| Gradient Patterns | Genetic variation changes gradually along geographic clines | Sharp racial categories don't capture continuous human diversity |
These patterns explain why using race as a biological variable is problematic from a genetic perspective. As researchers from the National Academies noted, "The distribution of variants within and among human populations also differs from that of many other species" 2 .
Moving toward more responsible research practices requires both conceptual shifts and practical methodological changes.
Application: Pre-specify how racial categorization might connect to biological, environmental or social mechanisms
Benefit: Prevents fishing expeditions for spurious race-effects
Application: Use genetic ancestry markers when biological ancestry is relevant
Benefit: Provides more precise biological data than race
Application: Include validated measures of discrimination and structural inequity
Benefit: Directly assesses social determinants of health
Application: Examine how race interacts with gender, class, immigration status
Benefit: Captures complex lived experiences
Leading institutions are now advocating for this more nuanced approach. As a 2024 National Academies report emphasized, "The committee highlighted the importance of carefully considering the use of race and ethnicity across the research process" 4 .
The most significant shift in biomedical research involves moving from simply documenting differences by race to understanding the mechanisms that produce those differences.
Pre-specify how racial categorization might connect to biological, environmental, or social mechanisms 5
Gather detailed information about environmental exposures, experiences of discrimination, and genetic ancestry when relevant
Interpret results within broader social and historical contexts of structural racism
Policy frameworks are evolving to support these improved approaches:
From agencies like the NIH and FDA that emphasize mechanism over mere correlation 6
That require explicit justification for the use of racial categories in research
That educate researchers about both historical misuse and emerging best practices
Processes that include diverse perspectives in research design and interpretation
As one analysis of current regulations notes, "The US is the only major country that explicitly enlists legal requirements regarding gathering ethno-racial data in biomedical research" 5 , highlighting the particular responsibility of American researchers to use these categories thoughtfully.
The journey toward responsibly using racial and ethnic categories in biomedical research is both a scientific and ethical imperative. By recognizing race as a social construct with biological consequences—rather than a biological reality itself—researchers can develop more precise models of health and disease.
The path forward requires abandoning race as a crude biological proxy while vigorously investigating how racism and social inequality become embodied as health disparities. It demands that we study both the specific genetic variants that influence drug metabolism and the social structures that determine exposure to stress, toxins, and unequal medical care.
As we stand at this crossroads, the choice is not between colorblindness and racial categorization, but between simplistic classification systems and nuanced approaches that do justice to human complexity. The future of biomedical research depends on getting this balance right—developing methods that acknowledge the reality of health disparities without reinforcing the biological myths that have historically divided us.
The goal is within reach: a research paradigm that uses racial categories not as explanations, but as signposts pointing toward the complex interplay of genes, environments, and social experiences that ultimately determine our health.