Race in health research: Considerations for researchers and research ethics committees

Main Article Content

W Van Staden
A Nienaber
T Rossouw
A Turner
C Filmalter
A E Mercier
J G Nel
B Bapela
M M Beetge
R Blumenthal
C D V Castelyn
T W de Witt
A G Dlagnekova
C Kotze
J S Mangwane
L Napoles
R Sommers
L Sykes
W B van Zyl
M Venter
A Uys
N Warren

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

How to Cite
Race in health research: Considerations for researchers and research ethics committees. (2023). South African Journal of Bioethics and Law, 16(1), 9-12. https://doi.org/10.7196/SAJBL.2023.v16i1.440
Section
Research Articles

How to Cite

Race in health research: Considerations for researchers and research ethics committees. (2023). South African Journal of Bioethics and Law, 16(1), 9-12. https://doi.org/10.7196/SAJBL.2023.v16i1.440

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.