NIH leaders call for a consensus on the use of race and ethnicity data in biomedical research
By Jeannine Mjoseth
Senior Science Writer, NHGRI
The use of racial and ethnic categories in biomedical research is part of a complex and sometimes contentious conversation about how science and society talk about human variation. Recognizing disparities experienced by racial and ethnic groups is important for public health, but how this information is reported can perpetuate the myth that race is a biological fact. Instead of throwing out the categories of race and ethnicity in biomedical research, National Institute of Health (NIH) leaders are calling for the scientific community to develop a consensus on its appropriate use in research.
National Human Genome Research Institute (NHGRI) Director Eric D. Green, M.D., Ph.D., National Institute on Minority Health and Health Disparities (NIMHD) Director Eliseo J. Pérez-Stable, M.D., and Senior Advisor to the NHGRI Director on Genomics and Health Disparities Vence L. Bonham, J.D., called for the consensus in a commentary published September 24 in the Journal of the American Medical Association.
"It is time to bring together genomics researchers, clinical laboratories, social scientists, medical educators and biomedical journals to identify common ground on the use of race and ethnicity, and to help the public understand the rich diversity and common history of all people," said Dr. Pérez-Stable. "An agreement on the correct use of race and ethnicity in biomedical research will help facilitate individualized medical care and usher in the era of precision medicine." Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle.
The commentary grew out of a 2016 workshop jointly convened by NHGRI and NIMHD to discuss the use of race and ethnicity data in genomics, biomedical, and clinical research, and its influence on minority health and health disparities. Recommendations highlighted in the commentary include the need to:
- increase the scientific rigor in collecting racial and ethnic data, especially in clinical settings;
- standardize data-collection methodologies;
- develop new approaches to minimize the survey burden in the collection of additional information; and
- recognize dimensions of race such as perceived race or ethnicity.
"In addition to gathering self-identified race and ethnicity information, we are advocating that researchers collect data that reflect different aspects of a person's identity, such as social and cultural identity, family background and ancestry derived from genomic analyses," said Dr. Green.
NHGRI and NIMHD are already supporting research on how physicians and scientists collect and report race and ethnicity data and its appropriate use in biomedical research. Major NIH efforts are also underway to enhance representation of diverse ancestral populations in genomic studies.
"We need to develop a consensus on the appropriate use of race and ethnicity in research study designs, interpretation of results, publications and medical care," said Mr. Bonham, who also serves as an associate investigator in NHGRI's Social and Behavioral Research Branch.
A consensus on the use of race and ethnicity in biomedical research will be especially useful as NHGRI, NIMHD and others advocate for increased ancestral diversity in genomics research.
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