Race in health research: Considerations for researchers and research ethics committees
Main Article Content
Abstract
This article provides ethical guidance on using race in health research as a variable or in defining the study population. To this end, a plain, non-exhaustive checklist is provided for researchers and research ethics committees, preceded by a brief introduction on the need for justification when using race as a variable or in defining a study population, the problem of exoticism, that distinctions pertain between race, ethnicity and ancestry, the problematic naming of races, and that race does not serve well as a presumed biological construct in genetic research.
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
The SAJBL is published under an Attribution-Non Commercial International Creative Commons Attribution (CC-BY-NC 4.0) License. Under this license, authors agree to make articles available to users, without permission or fees, for any lawful, non-commercial purpose. Users may read, copy, or re-use published content as long as the author and original place of publication are properly cited.
Exceptions to this license model is allowed for UKRI and research funded by organisations requiring that research be published open-access without embargo, under a CC-BY licence. As per the journals archiving policy, authors are permitted to self-archive the author-accepted manuscript (AAM) in a repository.
How to Cite
References
Lee SS. Racializing drug design: Implications of pharmacogenomics for health disparities. Am J Public Health 2005;95(12):2133-2138. https://doi. org/10.2105%2FAJPH.2005.068676
Van Niekerk AA. Deliberating about race as a variable in biomedical research. S Afr Med J 2011;101(4):248-250. https://doi.org/10.7196/SAMJ.4702
Jansen J, Walters C (editors). Fault Lines: A Primer on Race, Science and Society. Stellenbosch: African Sun Media, 2020. https://doi.org/10.1080/003591 9X.2020.1789239
Elias A, Paradies Y. The costs of institutional racism and its ethical implications for healthcare. J Bioethic Inquiry 2021;18(1):45-58. https://doi.org/10.1007/s11673- 020-10073-0
Kaufman JS, Cooper RS. Commentary: Considerations for use of racial/ethnic classification in etiologic research. Am J Epidemiol 2001;154(4):291-298. https:// doi.org/10.1093/aje/154.4.291
Ross PT, Hart-Johnson T, Santen SA, Zaidi NLB. Considerations for using race and ethnicity as quantitative variables in medical education research. Perspect Med Educ 2020;9(5):318-323. https://doi.org/10.1007/s40037-020-00602-3
Van Niekerk AA. The legitimacy of race as variable in the deliberations of institutional review boards. US-China L Rev 2014;11:1069.
Yudell M, Roberts D, DeSalle R, Tishkoff S. Taking race out of human genetics. Science 2016;351(6273):564-565. https://doi.org/10.1126/science.aac4951
Ioannidis JP, Powe NR, Yancy C. Recalibrating the use of race in medical research. JAMA 2021;325(7):623-624. https://doi.org/10.1001/jama.2021.0003
Corbie-Smith G, Henderson G, Blumenthal C, Dorrance J, Estroff S. Conceptualizing race in research. J National Med Assoc 2008;100(10):1235-1243. https://doi.org/10.1016/S0027-9684(15)31470-X
Vidich AJ, Lyman SM. Qualitative methods: Their history in sociology and anthropology. In: Denzin NK LY, eds. Handbook of Qualitative Research. 2nd ed. Los Angeles: SAGE, 2000:37-84. https://doi.org/10.1111/j.1365- 2648.2001.0472a.x
Gilman SL. Black bodies, white bodies: Toward an iconography of female sexuality in late nineteenth-century art, medicine, and literature. Crit Inquiry 1985;12(1):204-242. https://doi.org/10.1086/448327
Isaacs L, Daniels N. UCT distances itself from study on slavery, intelligence. CapeTimes, 2019. https://www.pressreader.com/south-africa/cape- times/20190514/281526522502137 (accessed 20 April 2023).
Merriam-Webster Dictionary. The difference between ‘race’ and ‘ethnicity’. How they differ and overlap. https://www.merriam-webster.com/words-at-play/ difference-between-race-and-ethnicity (accessed 18 April 2023).
Cohen R. Ethnicity: Problem and focus in anthropology. Ann Rev Anthropol 1978;7(1):379-403. https://doi.org/10.1146/annurev.an.07.100178.002115
Maier C, Craig A, Adams DM. Language use in ancestry research and estimation. J Forensic Sci 2021;66(1):11-24. https://doi.org/10.1111/1556-4029.14601
Mukhopadhyay C. Getting rid of the word ‘Caucasian’. In: Pollock M. Everyday Antiracism in Education. Anthropol News 2006;47(2):9-10. https://doi. org/10.1525/an.2006.47.2.9
National Human Genomics Research Institute. Race. https://www.genome.gov/ genetics-glossary/Race (accessed 18 April 2023).
Ali-Khan SE, Krakowski T, Tahir R, Daar AS. The use of race, ethnicity and ancestry in human genetic research. HUGO J 2011;5(1):47-63. https://doi.org/10.1007/ s11568-011-9154-5
Salway S, Barley R, Allmark P, et al. Enhancing the quality of published research on ethnicity and health: Is journal guidance feasible and useful? Div Health Care 2011;8(3):155-165.