The complicated role race and ethnicity play in research

Using race and ethnicity categories in research contributes to health inequities - but leaving them out can also be problematic, according to a recent consensus report published by the National Academies of Science, Engineering and Medicine.

Racial categories in the U.S., as defined by the Office of Management and Budget (OMB), are complex and fluid, often reflecting national origins or socio-cultural groups. The "Middle Eastern North African" category, for example, was added earlier this year.

People who identify as multiracial now represent more than 10% of the U.S. population. Capturing race and ethnicity in simple categories is complicated because perspectives on identity change with time and social context, according to M. Roy Wilson, president emeritus at Wayne State University and chair of the Committee on the Use of Race and Ethnicity in Biomedical Research, who led the year-long project.

Why this matters

Although race and ethnicity are social variables that are difficult to measure, they are often used as rigid categories in biomedical research. The gap between what race and ethnicity are and how they may be applied in science is problematic. "Reconciling this gap takes effort," Wilson writes. "But it is an effort well worth expending because race, however defined, commands an outsize role in our society, influences the distribution of resources and opportunities, and these in turn, influence health and health outcomes."

The report is rich with story leads as well as background and context for reporters covering studies that mention racial differences in health outcomes. Journalists can also use the recommendations for researchers to shape and amplify their reporting.

Key takeaways

The NASEM report emphasized that measuring race and ethnicity in biomedical research continues to remain important, but how that information is used must be carefully evaluated at every stage of a study. Demographic information can help researchers assess the diversity and inclusiveness of a study or identify trends and health disparities. However, researchers should recognize - and be transparent - when they use race and ethnicity as proxies for genetics, ancestry, or economic, environmental, and other factors that influence health, the authors recommended.

In recent years, the use of race in clinical calculators and guidelines has been called out for their potential to exacerbate health disparities. However, removing race from these tools is complex and might not inherently help achieve health equity, according to the authors.

Reporting tips

The report's recommendations to researchers are also crucial for journalists covering biomedical research and health disparities. Here are four tips based on the consensus's recommendations:

1. Define race and ethnicity. Ask sources about the categories they used in their work and when and how data were collected. More recent datasets may include categories such as "South Asian" or "multiracial," whereas historic data may only have included fewer or different categories.
2. Be transparent. Explain to readers how and why race and ethnicity information was used in research, and the implications of its use - or misuse.
3. Add context. Health disparities are not a result of race, but of social forces correlated with race and ethnicity, including discrimination, environmental exposures and socio-economic differences. Genetic ancestry, which is independent of race or ethnicity, may also play a role. The report suggests that researchers identify which of these other forces may drive health disparities. Journalists can also enrich their stories by digging into these underlying causes rather than simply reporting category differences.
4. Include community partners. When writing about health topics that are community-specific, such as Black maternal mortality, include perspectives from people within the community who may be affected by the health disparity or research related to it.

Story leads

Journalists wanting to investigate the impact of scientists' use of race and ethnicity on health outcomes can dig deeper into many aspects of the report. Some examples:

• How are researchers partnering with communities to go beyond documenting disparities? Projects like the Jackson Heart Study are examples of how effective engagement can improve both research and people's health.
• Different EHR systems often use inconsistent race and ethnicity terms. What happens when a person moves from one health system to another, or when a hospital updates its record-keeping?
• While health disparities amongst Black and Hispanic communities are well documented, data from people who belong to more than one race are often excluded from analyses. What are multi-racial people's experiences of disparities in health and health care?