Why How We Categorize People Medically Is a Life-or-Death Matter
In the world of biomedical science, where precision is paramount, the use of race and ethnicity remains one of the most complex and contentious issues. While the completion of the Human Genome Project in 2003 confirmed that humans are 99.9% identical at the DNA level and that race has no biological basis, these categories continue to appear in research studies, clinical trials, and medical guidelines 1 . This article explores the journey to standardize these concepts, the pitfalls of getting it wrong, and how major initiatives like the UK Biobank are navigating this delicate balance to advance health for everyone.
Genetic similarity among all humans
Participants in UK Biobank
Biological basis for race
At its core, the debate revolves around a fundamental distinction: race and ethnicity are socio-political constructs, not biological ones 1 . Historically, "race science" incorrectly posited that humans could be divided into biologically separate groups with distinct physical and mental characteristics. Decades of genomic research have disproven this, showing that genetic variation among populations follows overlapping, continuous distributions 1 .
Using these categories to understand health disparities without reinforcing the false notion that the disparities are caused by innate biological differences.
As the search for human genetic variation gained priority, the scientific community felt an urgent need to standardize how race and ethnicity were classified in research. A pivotal study analyzing 11 editorials and guidelines from leading biomedical science journals found a significant shift in their guidance 1 .
Journals attempted to define the concepts of race and ethnicity themselves.
Shift toward prescribing methodological processes for classification.
Focus on how race should be recorded and used in study design rather than what it "is" 1 .
This shift led to a practical, if imperfect, solution. Interviews with 17 genetic scientists revealed that the majority had adopted socio-political classification schemes from state bureaucracy—most notably, the categories used in the UK Census—primarily for pragmatic reasons 1 .
Note: This alignment of state bureaucracy and science created a standardized approach, but it also risked cementing socially-defined categories as seemingly "natural" in a scientific context.
UK Biobank stands as a real-world experiment in implementing these standardized categories. This unprecedented initiative contains biological samples, genetic data, and health information from over 500,000 UK participants, aged 40-69, designed to study the complex causes of diseases like cancer, diabetes, and heart disease 3 .
UK Biobank's journey to inclusive recruitment provides a step-by-step blueprint for large-scale biomedical studies:
The biobank's Ethics and Governance Framework raised concerns about the underrepresentation of ethnic minority groups 3 .
An Ethnicity Recruitment Sub-Group was established to ensure the recruitment drive reflected the UK's ethnic diversity 3 .
The Sub-Group set recruitment targets to mirror the 2001 census for England and Wales, where 91% of the population identified as Caucasian and 9% with an ethnic minority group 3 .
The biobank used mobile clinics to target geographically-clustered ethnic minority groups and translated information into different languages to build trust and understanding 3 .
The inclusion of ethnic minorities has already yielded scientifically valuable insights. Studies using UK Biobank data have revealed meaningful differences between ethnic groups in areas like sleep patterns, the association between depression and chronic pain, and obesity thresholds for diabetes risk 3 .
Scientists involved expressed concerns that findings attributed to specific ethnic groups could potentially lead to discriminatory behavior 3 . Despite these concerns, the Sub-Group concluded that excluding ethnic minorities would only worsen existing healthcare inequalities.
Recent guidance from the National Academies of Sciences, Engineering, and Medicine highlights specific research practices that are harmful and should be avoided 2 :
Making presumptions about an individual's health or behavior based on their race or ethnicity is a form of stereotyping that pathologizes groups.
Neither race nor ethnicity can be isolated as an independent variable. Studies using them can only point to correlations, not causal relationships.
Quantifying racial differences in physiological traits without a clear scientific rationale is poor practice that can reinforce biases.
The appropriate use of race and ethnicity is context-dependent 2 . They can be valuable when:
| Appropriate Use | Harmful Use |
|---|---|
| Tracking data to identify and address health inequities. | Using race as a biological explanation for disease. |
| Ensuring diverse representation in clinical trials. | Assuming an individual's health traits based on their race. |
| Investigating the social and environmental factors that race correlates with. | Reporting differences between groups without discussing limitations or alternative explanations. |
A leading proposal for improving practice is to require researchers to justify their use of racial classifications in advance. This means researchers should pre-specify hypotheses about the mechanisms—whether social, environmental, or genetic—that might explain any expected differences, moving beyond mere data dredging 7 .
Behind every great biomedical discovery is a suite of precise tools and reagents. While studying human diversity involves complex statistical models, the laboratory work relies on fundamental biochemical solutions. Here are some essential bio-reagent solutions used in fields like genetics and cell biology 9 :
A standard enzyme solution for detaching adherent cells from culture vessels for analysis and sub-culturing.
A universal buffer solution for washing cells, diluting substances, and maintaining a stable physiological pH.
An enzyme mix critical for digesting tissue and isolating primary cells for study.
A complex growth supplement added to cell culture media to provide nutrients and growth factors for cell survival and proliferation.
The standardization of race and ethnicity in biomedical science is not about finding a perfect classification system, because such a system does not exist. Instead, it is an ongoing process of rigorous, ethical, and thoughtful application of these concepts. The journey of editorials and biobanks shows a field learning from its past, increasingly aware that how we categorize people can either perpetuate harmful stereotypes or illuminate the path toward health equity.
The ultimate goal is a future where biomedical research fully accounts for human diversity without reinforcing biological myths, ensuring that the benefits of science are delivered fairly and effectively to all.
This article was constructed using scientific literature and summaries of key reports. For complete details and full context, the original sources cited provide in-depth information.