Towards a practical guide to overcoming barriers to research on race and ethnicity in a research institution in modern day South Africa

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This paper reflects on lessons learned from ethical review processes in South Africa to propose four practical ethical principles for future research on race and ethnicity in public health.

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Abstract

The study of race and ethnicity in medical research has a chequered history. Structural racism and health inequity intersect and impact health outcomes and are a manifestation of political and historical injustices. In South Africa, the legacy of Colonialism and Apartheid continue to impact the lived experienced. For communicable diseases and antimicrobial resistance (AMR), whilst evidence links the burden of disease to socio-economic deprivation and marginalization, the social determinants of health remain understudied. With increasing inequity in global health and healthcare systems, an analysis of race and ethnicity helps in understanding the provision and access of healthcare amongst marginalized populations. This policy practice piece provides a broad reflection of lessons learnt from the experience of our year-long deliberation with an institutional Human Research Ethics Committee (HREC) for an intersectional study on antibiotic-resistant infections and AMR in South Africa. We highlight the lessons learnt from our extensive discourse with HREC and we synthesize our lessons learnt into practical ethical principles that can be applied in HREC processes for studies that aim to study race and ethnicity in public health research. The principles include: 1) justification and framing of the research question within the history and context of the research location; 2) cultural suitability of the research team; 3) theoretical and practical considerations of the unintended consequences of studying race and ethnicity; and 4) distributive justice and autonomy in self-identification. These ethical principles can be adopted to any research team and HREC conducting and reviewing relevant clinical research.
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europepmc
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