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Citing AAP guidance, NASEM report calls for changes in use of race, ethnicity in biomedical research

October 31, 2024

Biomedical researchers should change the way they use race and ethnicity to improve scientific rigor, mitigate bias and build trust between the scientific community and different racial and ethnic communities, according to a new report from the National Academies of Sciences, Engineering and Medicine (NASEM).

The report Rethinking Race and Ethnicity in Biomedical Research discusses the historic roots of race-based medicine and provides recommendations for biomedical scientists, journal publishers and editors, professional societies, and funders of biomedical research on how to use race and ethnicity thoughtfully and transparently.

The report refers repeatedly to the 2022 AAP policy statement Eliminating Race-Based Medicine, which states that race is a social construct and should not be used as a proxy for biology or genetics.

“I’m encouraged that NASEM has recognized the Academy’s efforts to identify inequities in clinical guidance,” said AAP Chief Health Equity Officer and Senior Vice President, Equity Initiatives Joseph L. Wright, M.D., M.P.H., FAAP, a lead author of the AAP policy statement. “Our comprehensive approach is cited as an organizational approach that can help inform other professional societies that embark on a similar journey.”

The NASEM study was undertaken by the Committee on the Use of Race and Ethnicity in Biomedical Research. The committee assessed the use of race and ethnicity in a variety of research contexts, including race correction, medical devices, secondary data analysis and clinical decision-making tools. It also examined guidance for the use of race and ethnicity in publishing guidelines and clinical guidelines development.

Race and ethnicity are used widely in biomedical research, which authors defined as “scientific research across biological, social, and behavioral disciplines that pertains to human health.” Biomedical research has long emphasized exploring race at the expense of other concepts, such as racism, discrimination and social determinants of health, which can affect health, authors said.

Inappropriate use of race and ethnicity includes clinical calculators or guidelines that change an output based on a patient’s race or identity.

Simply removing race and ethnicity from all clinical tools, algorithms and guidelines, however, is complicated and would not resolve these issues, according to the report.

To combat inequities, report authors recommend researchers:

  • evaluate whether the use of race and ethnicity is appropriate or inappropriate;
  • operate with transparency;
  • base all inclusions or exclusions of racial and ethnic categories on scientific rationale, motivated by the research question;
  • define race and ethnicity in their work; and
  • identify concepts often conflated with race or ethnicity that are relevant to their study.

The authors said coordinated efforts and investments across the biomedical research ecosystem, as well as time and effort to retrain the workforce and adopt new ways of thinking, are needed to facilitate meaningful change. Such change requires consistent guidelines to assist researchers in developing work and promoting the thoughtful use of race and ethnicity.

The NASEM study was sponsored by Burroughs Wellcome Fund and the Doris Duke Foundation.

Last year, the AAP received a $2 million grant from the Doris Duke Foundation to help initiate projects to support the elimination of race-based medicine. One of those projects was the creation of a Rapid Revision Team (RRT), which is reviewing AAP policies, reports and clinical practice guidelines and recommending changes.

“Among the findings in the NASEM report, the study committee notes that bias is deeply rooted in the foundational evidence upon which much of clinical guidance is based,” Dr. Wright said. “This echoes the discovery of the RRT as they have systemically begun to lean into the compendium of pediatric clinical practice guidelines and policies.”

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