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

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 experience. For communicable diseases and antimicrobial resistance (AMR), whilst evidence links the burden of disease to socio-economic deprivation and marginalisation, 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 marginalised 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. Drawing from our extensive discourse with HREC, we highlight the key lessons learnt and synthesize them into practical ethical principles that can be applied in HREC processes for research that examines 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.