Rethinking Race and Ethnicity in Biomedical Research (2025)
Chapter: Front Matter
Rethinking Race and Ethnicity
in Biomedical Research
_______
M. Roy Wilson, Sarah H. Beachy,
and Samantha N. Schumm, Editors
Committee on the Use of Race and
Ethnicity in Biomedical Research
Board on Health Sciences Policy
Board on Population Health and Public
Health Practice
Board on Health Care Services
Health and Medicine Division
Consensus Study Report
NATIONAL ACADEMIES PRESS 500 Fifth Street, NW, Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the Doris Duke Foundation (Grant No. 2023-0143) and the Burroughs Wellcome Fund (Grant No. 1196654). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-72463-0
International Standard Book Number-10: 0-309-72463-5
Digital Object Identifier: https://doi.org/10.17226/27913
Library of Congress Control Number: 2024948686
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2025. Rethinking race and ethnicity in biomedical research. Washington, DC: National Academies Press. https://doi.org/10.17226/27913.
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COMMITTEE ON THE USE OF RACE AND ETHNICITY IN BIOMEDICAL RESEARCH
M. ROY WILSON (Chair), President Emeritus, Wayne State University
ALLISON AIELLO, James S. Jackson Healthy Longevity Professor of Epidemiology, Joseph L. Mailman School of Public Health, Columbia University
EFRÉN FLORES, MGB Radiology Vice-Chair, Diversity, Equity, and Inclusion, Massachusetts General Hospital
CARMEN GUERRA, Ruth C. and Raymond G. Perelman Professor of Medicine, University of Pennsylvania
ELIZABETH HEITMAN, Professor, Program in Ethics in Science and Medicine, Department of Psychiatry, University of Texas Southwestern Medical Center
MATTHEW F. HUDSON, Director of Cancer Care Delivery Research, Prisma Health
HUSSEINI MANJI, Co-chair, UK Government Mental Health Mission, Professor of Psychiatry and Behavioral Sciences, Oxford University
AMY MORAN-THOMAS, Associate Professor of Anthropology, Massachusetts Institute of Technology
MARGARET MOSS, Professor and Associate Dean for Nursing and Health Policy, Katherine R. & C. Walton Lillehei Chair in Nursing Leadership, University of Minnesota School of Nursing
ELIZABETH OFILI, Professor of Medicine, Morehouse School of Medicine, Chief Medical Officer, Morehouse Choice Accountable Care Organization
NEIL R. POWE, Chief of Medicine, Priscilla Chan and Mark Zuckerberg San Francisco General Hospital, Constance B. Wofsy Distinguished Professor and Vice-Chair of Medicine, University of California, San Francisco
ALIYA SAPERSTEIN, Professor of Sociology and Benjamin Scott Crocker Professor in Human Biology, Stanford University
ROLAND J. THORPE, JR., Professor and Associate Vice Provost of Faculty Diversity, Johns Hopkins Bloomberg School of Public Health
SHYAM VISWESWARAN, Professor and Vice-Chair of Clinical Informatics, Department of Biomedical Informatics, University of Pittsburgh
GENEVIEVE WOJCIK, Associate Professor of Epidemiology, Johns Hopkins Bloomberg School of Public Health
RUQAIIJAH YEARBY, Kara J. Trott Professor in Health Law, Moritz College of Law, Faculty Affiliate, Kirwan Institute for the Study of Race and Ethnicity, Professor, Department of Health Services Management and Policy, The Ohio State University
Study Staff
SARAH H. BEACHY, Study Co-Director, Board on Health Sciences Policy
SAMANTHA N. SCHUMM, Study Co-Director, Board on Health Sciences Policy
LYDIA TEFERRA, Research Associate, Board on Health Sciences Policy
ASHLEY PITT, Senior Program Assistant, Board on Health Sciences Policy
JOSEPH TUMFOUR, Associate Program Officer, Board on Health Sciences Policy (until July 2024)
ALEX HELMAN, Senior Program Officer, Board on Health Sciences Policy (from March 2024)
FRANCIS K. AMANKWAH, Senior Program Officer, Board on Health Care Services
RONIQUE TAFFE, Program Officer, Board on Population Health and Public Health Practice
CLARE STROUD, Senior Board Director, Board on Health Sciences Policy
National Academy of Medicine Fellow to Advance State Health Policy
BENJAMIN WESTON, Associate Professor, Department of Emergency Medicine, Medical College of Wisconsin
Consultant
MICHAEL ZIERLER, Science Writer, RedOx Editing
Reviewers
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report:
DAVID BLAZES, Gates Foundation
ANA V. DIEZ ROUX, Drexel University
NICOLETA J. ECONOMOU-ZAVLANOS, Duke University
ANTHONY GUISEPPI-ELIE, American International Institute of Medical Sciences, Engineering and Innovation
ANTHONY RYAN HATCH, Wesleyan University
VANESSA Y. HIRATSUKA, Southcentral Foundation
NINA G. JABLONSKI, The Pennsylvania State University
PHUONG KHANH MORROW, Takeda Pharmaceuticals
KEITH C. NORRIS, University of California, Los Angeles School of Medicine
MEI-SING ONG, Harvard University
ERIC RUBIN, New England Journal of Medicine
GOLEEN SAMARI, University of Southern California
DANURYS L. SANCHEZ, Columbia University
CASSANDRA TRIMNELL, Sickle Cell 101
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by CARLOS DEL RIO of Emory University and ROBERT B. WALLACE of the University of Iowa. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
Acknowledgments
The study committee and project staff acknowledge that the National Academies of Sciences, Engineering, and Medicine occupies space on what was the traditional and ancestral land of the Nacotchtank (Anacostan) people. We recognize that the Anacostians are gone but today have relatives in the Piscataway People. The committee and staff honor the Anacostian stewardship of what is now the D.C. area from time immemorial through to the beginnings of this country. We acknowledge the Piscataway People who continue to steward the land in the greater area today. Beyond acknowledgement, the committee and staff aspire to uphold a responsibility to the land and to honor the First People and their descendants while completing our work.
The study co-directors thank the sponsors, the Doris Duke Foundation and the Burroughs Wellcome Fund, for recognizing the importance of this topic and for supporting this work. The co-directors recognize and thank the staff team across the Boards on Health Sciences Policy, Population Health and Public Health Practice, and Health Care Services for their commitment to and persistence in thoughtfully navigating a challenging and complex topic. The committee and project staff are grateful to Michael Zierler for his drafting and editorial assistance to prepare this report. The committee and project staff are thankful for the many other National Academies staff who contributed to this report, including Christie Bell from the Office of the Chief Financial Officer, the National Academies Research Center, and the Health and Medicine Division Office of Communications staff. The committee and staff appreciate the contributions of Sarah Forthal for her approach to categorizing multiracial research participants (Appendix C). The committee and staff express their gratitude to the individuals who donated their time and expertise as speakers to share their work and personal experiences during the study process.
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Contents
Learning from Past Injustices and Charting a Path Forward
Study Background and the Committee’s Task
The Committee’s Approach and Organization of the Report
A Common Understanding of Race and Ethnicity
U.S. Office of Management and Budget Race and Ethnicity Categories
Interaction of Social Context and Biology When Using Race and Ethnicity in Biomedical Research
3 CURRENT USE OF RACE AND ETHNICITY IN BIOMEDICAL RESEARCH
Functions of Race and Ethnicity in Biomedical Research
History and Current Practices of Race Correction
Race and Ethnicity in Medical Devices
Health Disparities and the Study of Racism
Chapter Summary and Conclusions
4 EXISTING GUIDANCE ON USING RACE AND ETHNICITY IN BIOMEDICAL RESEARCH
Guidance for Using Population Descriptors in Genetics and Genomics Research
Guidance for Collecting Race and Ethnicity Data in Clinical Trials
Guidance for Community and Participant Engagement in Biomedical Research
Guidance on the Collection of Race and Ethnicity Information in Electronic Health Records
Guidance for Race and Ethnicity in Clinical Practice Guidelines
Guidance for Race and Ethnicity in Clinical Algorithms
Guidance for Race and Ethnicity in Clinical AI Algorithms
Guidance on the Reporting of Race and Ethnicity Data in Publications
Chapter Summary and Conclusions
5 RECONCEPTUALIZING THE USE OF RACE AND ETHNICITY IN BIOMEDICAL RESEARCH
Current Use of the OMB Race and Ethnicity Categories in Biomedical Research
Moving Toward Racism-Conscious Research
Approaches to Analyzing Data from Multiracial Individuals
Biomarkers of Stress and Other Physiological Processes
Chapter Summary and Conclusions
6 RECOMMENDATIONS TO GUIDE THE USE OF RACE AND ETHNICITY IN BIOMEDICAL RESEARCH
Conceptual Foundations for Assessing Appropriate Use of Race and Ethnicity in Research Settings
Considerations for the Use of Race and Ethnicity Throughout the Research Process
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Boxes, Figures, and Tables
BOXES
S-1 Concepts Related to Race and Ethnicity
2-1 Definitions of Race, Ethnicity, and Ancestry
2-3 U.S. Office of Management and Budget Categories (OMB) for Collection of Race and Ethnicity
2-4 What Is Biomedical Research?
4-1 Using Population Descriptors in Genetics and Genomics Research
4-2 Improving Representation in Clinical Trials and Research
4-3 Sources of Bias in Artificial Intelligence (AI) Algorithms
4-4 Reporting Guidelines for Biomedical Artificial Intelligence (AI) Algorithms
5-2 Race, Ethnicity, and Related Concepts
5-3 Possible Ways to Measure Structural Racism
6-1 Questions for Researchers to Consider While Engaging in the Research Process
FIGURES
S-1 Key considerations for the use of race and ethnicity throughout the biomedical research process
4-1 Developmental life cycle of an algorithm and guiding principles to mitigate and prevent bias
5-1 Social determinants of health framework
6-1 Key considerations for the use of race and ethnicity throughout the biomedical research process
6-2 Community engagement and translational stages of biomedical research
TABLES
3-1 Types of Biomedical Research Study
3-2 Examples of Clinical Calculators That Incorporate Race Correction
3-3 Examples of Medical Devices with Differential Performance Across Racial and Ethnic Groups
3-4 Examples of Clinical Algorithms
4-1 Community Engagement Continuum: A Comparison of Levels of Engagement
5-1 Multiracial Categorization Schemes Currently in Use in the Literature
6-1 Race, Ethnicity, and Associated Concepts
A-1 Preliminary Search Terms—Keyword Matrix
B-1 The Community Engagement Continuum: An Extended Comparison of Stages of Engagement
Preface
The difficulty of precisely defining race was captured by the Harvard historian Evelyn Brooks Higginbotham in 1992: “When we talk about the concept of race, most people believe that they know it when they see it but arrive at nothing short of confusion when pressed to define it.”1 More than 30 years later, despite mapping of the human genome and an understanding that race is not a scientifically valid measure of genetic variation, defining race still poses a challenge.
How individuals identify with race and its meaning varies across time and generations. My Japanese mother raised me by herself for the first 5 years of my life, and I would have identified racially as Asian; later during my teenage years and into late adulthood, I identified unequivocally as Black; more recently, I identify just as often as multi-racial. My father identified as Negro and was offended at the designation of Black. My two children, both now grown, are not familiar with the term Negro, except perhaps in a vague historical sense. How do they identify racially? I really don’t know, and I don’t think they ponder it much.
Herein lies the conundrum in defining race: racial identity is complex, dynamic, and personal, and it is influenced by our perceptions of ourselves and the perceptions others have of us. Science, on the other hand, tends toward reductionism and categorical thinking. Reconciling this gap takes effort. But it is an effort well worth expending because race, however defined, commands an outsized role in our society, influences the distribution of resources and opportunities, and these in turn, influence health and health outcomes. In order to better serve society, our biomedical research methods must better represent what race means in people’s lives.
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1 Evelyn Brooks Higginbotham. 1992. African-American Women’s History and the Metalanguage of Race. Journal of Women in Culture and Society. University of Chicago Press.
Our committee had a challenging task: to balance the complexity of race (and ethnicity) as social constructs while also offering pragmatic recommendations in the use of these constructs; to confront the sordid history of racial categorization while also acknowledging that even though history may influence what happens today, it may not fully represent current-day circumstances; and finally, while it may be discomforting, square up to the fact that racism occurs even today and has profound impacts on the health of those bearing the brunt of it.
Our committee, composed of an amazing group of experts, proved up to the task. More than their expertise, each brought different perspectives that were shaped by their individual experiences and fields of study. Through the sharing of their knowledge and perspectives, a consensus on a difficult, often contentious topic was shaped with skilled prodding and guidance from a terrific staff. The committee’s conclusions and recommendations lay out challenges and opportunities for advancing biomedical research that use race and ethnicity. The topic of race and ethnicity is often fraught with controversy. I thank the sponsors for tackling the use of these constructs in biomedical research and for tasking our committee to grapple with its many dimensions. The work of our committee was enriched by outside experts and community members who participated in the public sessions as well as the reviewers of our draft report. The committee acknowledges their enormous contributions and thanks them for being an important part of our report.
M. Roy Wilson, Chair
Committee on the Use of Race and Ethnicity in Biomedical Research
