Race and ethnicity are applied in inappropriate and even harmful ways in biomedical research, the National Academies of Sciences, Engineering and Medicine said in a report issued on Wednesdayinviting scholars, research funders, and publishers to transform how they use—and don’t use—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 ‘correct’ labels rather than understanding why they are used,” the report said. Improving their use in biomedical research will require “intentionality at every step of the research process and understanding the nuances involved.”

Race and ethnicity is a fraught topic, said report committee chairman M. Roy Wilson, president emeritus of Wayne State University. “It’s personal, it differs by time and country, and there is no uniform, standard definition that has stood the test of time,” he said in an interview with STAT.

Since the nation’s 2020 race riot, discussions about how and why race is used have roiled medical science, with many saying that research often misrepresents racial groups as biologically different. when I don’t. Such misconceptions about biology in medicine, such as believing 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 how it is used have long been discussed in social science, but those discussions have been more recent—and sometimes painful — for those in medicine and biomedical research.

The 271-page report, sponsored by the Doris Duke Foundation and Burroughs Wellcome Fund and gathered by a committee over the course of a year, it leans into the complexity and nuance of the topic, issuing nine detailed recommendations to the biomedical research community to make sound ethical, contextual, and scientific decisions about how and whether to use race and ethnicity.

The National Institutes of Health requires that its funded research 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 like black, Asian or Hispanic are meant to be used as social attributes, not scientific or biological, those standards say. But over time, “their use in research contributes to their combination of biological significance and importance,” the report says.

As a result, clinical research often inappropriately uses racial and ethnic categories as proxies for factors such as genetic variants and environmental exposures. A year and a half ago, another NASEM report, commissioned by the NIH, called for a review of the mod genetics researchers use the same racial and ethnic labelssaying it perpetuates “a widespread misconception that people can be grouped into discrete, innate biological categories.” When those concepts make their way into clinical algorithms — tools doctors use every day to make decisions about their patients’ care — can lead to harm.

In one of its recommendations, the new report aims to encourage research that uncovers the underlying factors driving the 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 aren’t asked. “There’s a little bit of that that’s starting to happen, but not as many studies as the biological characteristics of different races. Every journal has dozens of them monthly,” Wilson said. “But very few talk about other variables that might be more relevant.”

Other recommendations call for researchers to provide operational definitions of race and ethnicity in their studies, justification for the use of race and ethnicity in research, and transparency in their methods.

“Requiring researchers to provide a scientific rationale for using race and ethnicity is something that is specific and new and not being done,” said Shazia Siddique, a health systems researcher and gastroenterologist at the University of Pennsylvania who led the study. . review by the Agency for Healthcare Research and Quality on the impact of health care algorithms on racial and ethnic disparities. This recommendation in particular could have an impact on patients, “because it has so many downstream consequences on how we then implement that research,” she said, including in clinical guidelines and decision-making tools.

None of the report’s recommendations mean that race and ethnicity data should remain uncollected, the report points out.

“Using race and ethnicity may be appropriate, but it depends on the context,” said committee member Ruqaiijah Yearby, who teaches health law at The Ohio State University Moritz College of Law. “If researchers are going to use race and ethnicity, it should be clear why, and if they use it to study health disparities, they should think about including other causes of it,” such as racism or the social determinants of her health. said.

Identifying the utility of race and ethnicity will require careful case-by-case analysis by researchers. “To better serve society, our biomedical research methods must better represent 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 were often left out of research because they did not clearly fit into established categories. “How do you describe me? I don’t know,” Wilson said. “I’ve always identified as black, but my mother is Japanese.”

OMB was recently launched revisions to its categories of race and ethnicityadding the Middle East or North Africa category and encouraging multiple choice selection; agencies, including the NIH, will submit plans to incorporate those changes by Sept. 28, 2025 — a move that will influence how race and ethnicity are collected in future research. But Wilson stressed that mandatory collection of race and ethnicity to meet recruiting goals should be considered separately from categories collected for analytical purposes, which should be “as granular as the statistics will allow you to be.” Many categories are considered problematic; for example, grouping Asians – nearly 60% of the world’s population – into a single category served to mask health disparities within smaller groups.

Another recommendation encourages researchers to collaborate more with the communities they study. Tapping earlier in the process, Yearby said, would improve research by helping to refine questions and theories. “If you leave it until the end, until recruitment, you miss a lot of issues that could help your hypothesis,” she said.

The responsibility to use race and ethnicity in better ways lies not only with researchers, but with the entire biomedical ecosystem, Yearby said. Journal editors and research funders must play a role by providing researchers with consistent guidelines on how best to use race and ethnicity and then enforcing those guidelines, the report recommended. “This is an area that really hasn’t been developed very well,” Siddique said. A lot of people are saying that journals and funders like the NIH should be doing this, but what we should be doing is not entirely clear.”

A concrete recommendation from the report encourages funders to extend research timelines to allow scientists to engage the community in their research. Many community researchers said they struggled to get grants because of the longer time frame their research required and said the work was often rejected by leading medical journals as not being rigorous enough. “This report says that community-based participatory research is not separate from the biomedical research that’s happening,” Yearby said. “You should work with the community you study.”

Researchers need resources to be able to accomplish all of this, Wilson noted—and the committee was careful to place the burden solely on the scientists. “There is a responsibility on research sponsors and funders to properly fund biomedical research that looks deeper into problems,” Wilson said, “and not just do what’s more convenient.”