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Journal of Science Policy & Governance | Volume 18, Issue 04 | September 27, 2021

Policy Memo Competition

Policy Memo: Defining the Race and Ethnic Standards for Federal Statistics and Administrative Reporting​

Rene Canady (1)*, Jorge Jimenez (2)*, Danesh Thirukumaran (3)*
  1. Washington University in St. Louis, Department of Sociology, St. Louis, MO
  2. University of Pittsburgh, Department of Bioengineering, Pittsburgh, PA
  3. Georgetown University, Department of Neuroscience, Washington, D.C.
*All authors contributed equally

Corresponding author: [email protected]​
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https://doi.org/10.38126/JSPG180406
Keywords: race; ethnicity; health disparities; racial bias; social inequality; bioethics
Executive Summary: Race describes cultural, historical, and oppressive relationships in society. The use of race in biomedical and scientific studies has been a powerful tool that can reinforce and alter society’s current assumptions about race. Some of the historical uses of race include evidence for race-based medicine, biological inferiority, and genocide. These uses have all used race as a crude proxy for genetic makeup, rather than a biological expression of the social environment that infiltrates the health and well-being of every American. By defining race and its social and cultural impacts on identity and the human experience within research, the field of biomedicine will improve clarity and integrity in addressing historical, scientific, and clinical inequalities. Currently, the Office of Management and Budget (OMB) does not contain a definition of race and uses homogeneous ethnical categories when reporting population statistics. We propose that the definition of race be added in the collection of race data as a requirement of the OMB for nationally conducted research.

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References

  1. “67 FR 8451 - Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies; Republication - Content Details - R2-59.” Accessed May 2, 2021. https://www.govinfo.gov/app/details/FR-2002-02-22/R2-59
  2. American Sociological Association. “Race and Ethnicity.” Accessed May 2, 2021. https://www.asanet.org/topics/race-and-ethnicity.
  3. Bibbins-Domingo, Kirsten, and Alicia Fernandez. “BiDil for Heart Failure in Black Patients: Implications of the U.S. Food and Drug Administration Approval.” Annals of Internal Medicine 146, no. 1 (January 2, 2007): 52–56. https://doi.org/10.7326/0003-4819-146-1-200701020-00009.
  4. Brody, Howard, and Linda M. Hunt. “BiDil: Assessing a Race-Based Pharmaceutical.” Annals of Family Medicine 4, no. 6 (November 2006): 556–60. https://doi.org/10.1370/afm.582. 
  5. Caldwell, W. E., and H. C. Moloy. “Anatomical Variations in the Female Pelvis and Their Effect in Labor with a Suggested Classification.” American Journal of Obstetrics and Gynecology 26, no. 4 (October 1, 1933): 479–505. https://doi.org/10.1016/S0002-9378(33)90194-5.
  6. Cerdeña, Jessica P., Marie V. Plaisime, and Jennifer Tsai. “From Race-Based to Race-Conscious Medicine: How Anti-Racist Uprisings Call Us to Act.” The Lancet 396, no. 10257 (October 10, 2020): 1125–28. https://doi.org/10.1016/S0140-6736(20)32076-6.
  7. Collins, F. S., and M. K. Mansoura. “The Human Genome Project. Revealing the Shared Inheritance of All Humankind.” Cancer 91, no. 1 Suppl (January 1, 2001): 221–25. https://doi.org/10.1002/1097-0142(20010101)91:1+<221::aid-cncr8>3.3.co;2-0.
  8. Grobman, William A., Yinglei Lai, Mark B. Landon, Catherine Y. Spong, Kenneth J. Leveno, Dwight J. Rouse, Michael W. Varner, et al. “Development of a Nomogram for Prediction of Vaginal Birth After Cesarean Delivery.” Obstetrics & Gynecology 109, no. 4 (April 2007): 806–12. https://doi.org/10.1097/01.AOG.0000259312.36053.02.
  9. Hsu, William C., Maria Rosario G. Araneta, Alka M. Kanaya, Jane L. Chiang, and Wilfred Fujimoto. “BMI Cut Points to Identify At-Risk Asian Americans for Type 2 Diabetes Screening.” Diabetes Care 38, no. 1 (January 1, 2015): 150–58. https://doi.org/10.2337/dc14-2391.
  10. “Individual Fellowships | Research Training and Career Development.” Accessed May 2, 2021. https://researchtraining.nih.gov/programs/fellowships.
  11. “Institutional Training Grants | Research Training and Career Development.” Accessed May 2, 2021. https://researchtraining.nih.gov/programs/training-grants.
  12. Ioannidis, John P. A., Neil R. Powe, and Clyde Yancy. “Recalibrating the Use of Race in Medical Research.” JAMA 325, no. 7 (February 16, 2021): 623. https://doi.org/10.1001/jama.2021.0003.
  13. Kahn, Jonathan. “Misreading Race and Genomics after BiDil.” Nature Genetics 37, no. 7 (July 2005): 655–56. https://doi.org/10.1038/ng0705-655.
  14. Lin, Scarlett S., and Jennifer L. Kelsey. “Use of Race and Ethnicity in Epidemiologic Research: Concepts, Methodological Issues, and Suggestions for Research.” Epidemiologic Reviews 22, no. 2 (January 1, 2000): 187–202. https://doi.org/10.1093/oxfordjournals.epirev.a018032.
  15. “NOT-OD-21-066: Request for Information (RFI): Inviting Comments and Suggestions to Advance and Strengthen Racial Equity, Diversity, and Inclusion in the Biomedical Research Workforce and Advance Health Disparities and Health Equity Research.” Accessed May 2, 2021. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-066.html.
  16. Nott, J. C. “The Mulatto a Hybrid — Probable Extermination of the Two Races If the Whites and Blacks Are Allowed to Intermarry.” Research-article. http://dx.doi.org/10.1056/NEJM184308160290201. Massachusetts Medical Society, June 2, 2010. World. https://doi.org/10.1056/NEJM184308160290201.
  17. O’Brien, Elizabeth. “Pelvimetry and the Persistance of Racial Science in Obstetrics.” Endeavour, Continuity and Change in the History of Mexican Public Health, 37, no. 1 (March 1, 2013): 21–28. https://doi.org/10.1016/j.endeavour.2012.11.002.
  18. “OMB DIRECTIVE 15: RACE AND ETHNIC STANDARDS FOR FEDERAL STATISTICS AND ADMINISTRATIVE REPORTING.” Accessed May 2, 2021. https://wonder.cdc.gov/wonder/help/populations/bridged-race/directive15.html.
  19. Rathore, Saif S, and Harlan M Krumholz. “Race, Ethnic Group, and Clinical Research.” BMJ : British Medical Journal 327, no. 7418 (October 4, 2003): 763–64.
  20. Research, Center for Drug Evaluation and. “Conducting Clinical Trials.” FDA. FDA, June 30, 2020. https://www.fda.gov/drugs/development-approval-process-drugs/conducting-clinical-trials.
  21. Roberts, Dorothy E. “Is Race-Based Medicine Good for Us?: African American Approaches to Race, Biomedicine, and Equality.” The Journal of Law, Medicine & Ethics 36, no. 3 (August 1, 2008): 537–45. https://doi.org/10.1111/j.1748-720X.2008.302.x.
  22. Sniderman, Allan D, Raj Bhopal, Dorairaj Prabhakaran, Nizal Sarrafzadegan, and Andre Tchernof. “Why Might South Asians Be so Susceptible to Central Obesity and Its Atherogenic Consequences? The Adipose Tissue Overflow Hypothesis.” International Journal of Epidemiology 36, no. 1 (February 1, 2007): 220–25. https://doi.org/10.1093/ije/dyl245.
  23. The White House. “Statistical Programs & Standards.” Accessed April 15, 2021. https://www.whitehouse.gov/omb/information-and-regulatory-affairs/statistical-programs-standards/.
  24. Vyas, Darshali A., David S. Jones, Audra R. Meadows, Khady Diouf, Nawal M. Nour, and Julianna Schantz-Dunn. “Challenging the Use of Race in the Vaginal Birth after Cesarean Section Calculator.” Women’s Health Issues: Official Publication of the Jacobs Institute of Women’s Health 29, no. 3 (June 2019): 201–4. https://doi.org/10.1016/j.whi.2019.04.007.
  25. Vyas, Darshali A., Leo G. Eisenstein, and David S. Jones. “Hidden in Plain Sight — Reconsidering the Use of Race Correction in Clinical Algorithms.” New England Journal of Medicine 383, no. 9 (August 27, 2020): 874–82. https://doi.org/10.1056/NEJMms2004740.
  26. Yudell, Michael, Dorothy Roberts, Rob DeSalle, and Sarah Tishkoff. “Taking Race out of Human Genetics.” Science 351, no. 6273 (February 5, 2016): 564–65. https://doi.org/10.1126/science.aac4951.
Rene Canady’s career goal is to understand Black liberation through the biomedical world. As an interdisciplinary scholar, she is interested in studying the racialization of the biomedical field in order to improve the holistic health of marginalized groups. She is currently a Sociology Ph.D. student at the University of Washington in Saint Louis and holds a B.S.E. in bioengineering from the University of Pittsburgh. Rene is both a fellow of the Spencer T. and Ann W. Olin Fellowship Program and the National Science Foundation Graduate Research Fellowship Program.
 
Jorge Jimenez is a queer Mayan interdisciplinary scholar. They are earning a Ph.D. in bioengineering at the University of Pittsburgh’s Swanson School of Engineering. They earned an NIH T32 grant to study rare corneal disease and develop novel ocular drug delivery systems. Jorge is a National Science Foundation’s Alliances for Graduate Education and the Professoriate (AGEP-KAT) scholar where they utilize their bilingualism (Spanish/English) in community engagement in Latinx healthcare and engineering education. Jorge utilizes their lived experience and scientific training to intersect health disparities topics in drug delivery education through the Center for the Integration of Research Teaching, and Learning (CIRTL).
 
Danesh Thirukumaran holds a B.S.E. in bioengineering from the University of Pittsburgh and an M.S. in Neuroscience from Georgetown University. He hopes to continue his career working at the center between biomedical innovation and clinical practice. He also hopes to develop underserved populations’ understanding of the medical realm to assist in navigating the healthcare system.
 
Acknowledgements
The authors would like to share their deepest gratitude for the members of University of Pittsburgh Science Policy Group for organizing policy memo workshops. We would like to specifically thank Nathan Lampenfield (MPH candidate in Health Policy and Management) for providing feedback on initial draft revisions.
 
Disclaimer
The authors disclose that they have no conflict of interest in this form.
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