Race and ethnicity are used in inappropriate and even harmful ways in biomedical research, the National Academies of Science, Engineering, and Medicine said in a report published Wednesdaycalling on scientists, research funders and publishers to transform the way they use (and don’t use) the categories in research.
“The current use of race and ethnicity in research is sometimes seen as a box-ticking exercise or a matter of using the ‘right’ labels rather than understanding why they are used,” the report said. Improving its use in biomedical research requires “intentionality at every step of the research process and understanding the nuances involved.”
Race and ethnicity are a charged topic, said report committee chairman M. Roy Wilson, president emeritus of Wayne State University. “It’s personal, it varies from time to time and from country to country, and there is no uniform, standard definition that has stood the test of time,” he said in an interview with STAT.
Since the country’s racial uprising in 2020, discussions about how and why race is used have roiled medical science, with many saying research often misrepresents racial groups as biologically different. when they don’t. Such misconceptions about biology in medicine, for example the belief that black people have thicker skin and don’t feel pain, have led to systematic discrimination and generations of harm caused by poorer medical care, experts say.
The use of race, and the implications and harms of the way it is used, has long been debated within the social sciences, but those discussions are more recent – and sometimes painful – for those working in medicine and biomedical research.
The 271-page report, sponsored by the Doris Duke Foundation and the Burroughs Wellcome Fund and composed by a committee over the course of a year delves into the complexity and nuance of the topic and makes nine detailed recommendations to the biomedical research community to make ethical, contextual, and scientifically sound decisions about how and whether race and ethnicity should be used.
The National Institutes of Health requires its funded research to report racial and ethnic categories established by the Office of Management and Budget in 1997 — the same categories used in the U.S. Census — to understand and encourage the diversity of study participants. Categories such as Black, Asian or Hispanic are intended to be used as social markers, not scientific or biological ones, the standards state. But over time, “their use in research contributes to their admixture with biological meaning and importance,” the report said.
As a result, clinical research often inappropriately uses racial and ethnic categories as a proxy for factors such as genetic variants and environmental exposures. A year and a half ago, another NASEM report, commissioned by the NIH, called for an overhaul of how genetics researchers use the same racial and ethnic labels, saying they “perpetuate a widespread misconception that people can be grouped into separate, innate biological categories.” When these concepts find their way into clinical algorithms – tools that doctors use every day to make decisions about the care of their patients – they can lead to harm.
In one of its recommendations, the new report aims to encourage research that uncovers the underlying factors that drive correlations between race, ethnicity and the incidence of certain diseases and health outcomes, such as income or exposure to pollutants. Too often, Wilson said, those questions go unanswered. “A little bit of that is starting to happen, but not nearly as much research as there is on biological traits in different breeds. Every magazine has dozens every month,” Wilson said. “But very few people talk about other variables that could be more relevant.”
Other recommendations call on researchers to provide operational definitions for race and ethnicity in their studies, reasons for using race and ethnicity in research, and transparency in their methods.
“Requiring researchers to provide evidence for their use of race and ethnicity is something that is specific and new and is not being done,” said Shazia Siddique, a health systems researcher and gastroenterologist at the University of Pennsylvania , who led an investigation. judgement by the Agency for Healthcare Research and Quality on the impact of healthcare algorithms on racial and ethnic disparities. That recommendation in particular could have an impact on patients, “because it has so many implications for how we then implement that research,” she said, including in clinical guidelines and decision-making tools.
None of the report’s recommendations mean data on race and ethnicity should not be collected, the report points out.
“The use of race and ethnicity may be appropriate, but it is context-dependent,” said committee member Ruqaijah Yearby, who teaches health law at The Ohio State University Moritz College of Law. “If researchers are going to use race and ethnicity, they need to be clear about why, and if they use it to study health disparities, they need to think about considering other causes,” such as racism or social determinants of health, she says. said.
Identifying the utility of race and ethnicity requires careful case-by-case analysis by researchers. “To better serve society, our biomedical research methods must better reflect what race means in people’s lives,” Wilson wrote in a foreword to the report.
To do this, one recommendation focuses on how to include multiracial and multiethnic people, who have often been left out of research because they did not quite fit into established categories. “How do you characterize me? I don’t know,” Wilson said. “I have always identified as black, but my mother is Japanese.”
OMB recently released revisions to the race and ethnicity categoriesby adding the Middle Eastern or North African category and encouraging multiple choice selection; Agencies, including the NIH, will submit plans to incorporate these changes by September 28, 2025 – a step that will impact how race and ethnicity are collected in future research. But Wilson emphasized that mandatory collection of race and ethnicity to meet recruitment goals should be separated from the categories collected for analytical purposes, and should be “as granular as the statistics allow you to be.” Many categories are seen as problematic; For example, lumping Asians – nearly 60% of the world’s population – into one category has served to mask health disparities within some smaller groups.
Another recommendation encourages researchers to collaborate more with the communities they study. Reaching out earlier in the process would improve the research by helping refine questions and theories, according to Yearby. “If you leave it until the end, until recruitment, you’re going to miss a lot of things that could help with your hypothesis,” she said.
The responsibility to use race and ethnicity in better ways lies not just with researchers, but with the entire biomedical ecosystem, Yearby said. Journal editors and research funders must play a role in providing researchers with consistent guidelines on the best use of race and ethnicity, and then enforcing those guidelines, the report recommends. “That is an area that has not actually been developed very well yet,” says Siddique. Many people say that journals and funders like the NIH should do this, but what we should do is not entirely clear.”
One concrete recommendation from the report encourages funders to extend research timelines so that scientists can engage the community in their research. Many community researchers have said they have struggled to receive grants because of the longer timeframe their research requires, and said their work was often rejected by leading medical journals because it was not rigorous enough. “This report says that community-based participatory research is not separate from the biomedical research that is taking place,” Yearby said. “You have to work with the community you study.”
Researchers need resources to accomplish all this, Wilson noted—and the committee was mindful of placing the burden solely on scientists’ shoulders. “There is a responsibility on the part of sponsors and funders of research to appropriately fund biomedical research that goes deeper into the problems,” Wilson said, “and not just do what suits best.”