The use of race and ethnicity in sickle cell disease research

Abstract

This study explores practices surrounding the operationalization of ethno-racial categories (ERCs) as confounders in biomedical research, with a focus on sickle cell disease (SCD) as a model. ERCs, often aggregate labels encompassing diverse individuals which raises questions about their relevance as confounders. Given SCD's racialization as a "Black" disease, understanding ERC utilization is crucial. This study analyzed 1,105 SCD studies published globally. Data were collected on whether ERC adjustment was employed, regional variations in ERC-adjustment rates, labels used for ERCs, rationales provided for ERC matching, and methods used for ERC determination. 28% of the studies utilized ERC adjustment, with significant regional disparities (p < 0.001). Notably, Western studies showed higher rates of ERC adjustment compared to other regions. However, crucial details such as ERC labels and methodology were frequently missing. Commonly used labels included "African" or "Black." Only 7% of studies provided explicit rationales for ERC matching, and 70% did not specify the method used for ERC determination. The findings underscore the need to adhere to guidelines on ERC operationalization in biomedicine. The lack of standardized practices raises concerns about potential biases and misinterpretations in research outcomes. Adhering to clear guidelines can mitigate the risk of perpetuating racial stereotypes and inequalities while ensuring research integrity.