Social science & medicine (1982) · 2026
Conceptual ambiguities, systemic barriers and emotional labour: Healthcare professionals' perspectives on navigating ethnicity in genomic medicine.
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Bharti Nishtha, Weller Susie, Lucassen Anneke
Аннотация
The increasing integration of genomics across multiple clinical specialties has necessitated a better understanding of how ethnicity information is understood, prioritised, and recorded. In many areas of medicine, ethnicity data is routinely collected to monitor access to services and to support aspects of clinical decision-making. In genomic medicine, ethnicity information is additionally drawn upon as a proxy for biological ancestry, to support the interpretation of genomic data. However, ethnicity is a socially constructed and politically charged category and rarely aligns with the biological specificity demanded by genomic analysis, complicating its operationalisation in clinical practice. Drawing on qualitative interviews with healthcare professionals involved in genomic medicine (n = 23), including clinical geneticists, genetic counsellors, clinical scientists, and nursing teams, this study examines how ethnicity is interpreted and used in everyday clinical work. Using reflexive thematic analysis informed by an interpretivist epistemology, we identify widespread uncertainty about the meaning, purpose, and downstream use of ethnicity data, alongside concerns about discomfort, miscommunication, and the emotional labour involved in ascertaining patients' ethnicity. Participants described particular inconsistencies in data collection following the introduction of genomic testing across various clinical disciplines, limited visibility of how ethnicity information is used beyond the clinic, and tensions between routine data collection and more targeted, context-specific approaches. These findings underscore the need for greater attention to the social and ethical dimensions of recording ethnicity in genomic medicine, including clearer workforce support, and more nuanced approaches to when and how ethnicity-related information is sought.