'Hell No!'-Exploring Scepticism in UK Health Research Since COVID-19 Amongst Communities Who Have Been Labelled 'Underserved'

“绝对不行!”——探究自新冠疫情爆发以来,英国被贴上“服务不足”标签的群体对健康研究的怀疑态度

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Abstract

Healthcare research globally has seen a renewed shift to increase diversity in research participation. People previously excluded from the production of biomedical knowledge, and often labelled 'underserved', are now a focus of attention. In this paper we discuss an in-depth interview study in South London which aimed to better understand how the very public era of COVID-19 research has affected people's trust, opinions and relationships with health research, focusing on hearing from those with intersectional experiences of inequality and injustice. We suggest that 'underserved', much like 'diversity', obscures historically rooted injustice with narratives of what Chandra Talpade Mohanty calls 'benign variation' and assumptions that health research has always worked in service to others. Rather, we draw on the work of Sara Ahmed to ensure we take participants' concerns, scepticisms or complaints about research seriously. Drawing on participants' narratives of health injustice, we document how participants embody critical dispositions, which demand more complex understandings of health research that incorporate doubts, nuance and multiple sources. Such accounts render into stark relief the underlying power relations in attempts to simplify research participation narratives. This study demonstrates research institutions need to engage in more complex dialogue with communities in order to be worthy of trust.

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