‘Improving the odds for everybody’: Narrative and media in stem cell donor recruitment patient appeals, and the work to redress racial inequity

Abstract

Stem cell registries, which provide cells for transplants in blood malignancy treatment, recruit donors partly through mobilising narrative. This is often via appeals from patients without matching donors who seek to encourage registrations from people who might go on to be their own, or somebody else's, donor. Registries have also historically underserved racially minoritised communities, who are less likely to locate matching donors. As such, appeals often come from racially minoritised patients. Prior research highlights the importance of narrative in health contexts, and donation in particular. However, the impact of stories on those telling them is underexplored. This article fills this gap, providing analysis of a range of interview, media and documentary data. It sketches out the contours of appeal work, showing how patients' private lives become publicly exposed. It highlights how appeals might be understood as collective action on behalf of racially minoritised communities, flagging how those most affected by inequity often become central to the fight to redress it. Through this, the article extends an emergent 'sociology of donation',

Ethico‐racial positioning in campaigns for COVID‐19 research and vaccination featuring public figures

“…Moreover, new digital media-social media platforms especially-have shifted how different actors engage in consuming and producing media content in complex ways (Tufekci, 2013), particularly in health contexts (Henderson & Hilton, 2018). Not least, social media have blurred the role of the 'content producer', potentially shifting communicative labour away from traditional media producers to other actors, including patients, families and marginalised communities (Williams, 2022).…”

“…Sociologists of health and illness have long engaged with questions about race, ethnicity and racism (e.g. Ahmad & Bradby, 2007), including investigations of the processes and outcomes of racialisation (Smart & Weiner, 2018; Williams, 2022). This work has often highlighted that racialised health interventions fall prey to problems like essentialism, reductivism, and misidentification, which Aspinall (2021) also found in the UK government response to COVID‐19.…”

“…We recognise that discussions of UK health inequalities usually centre the terminology of ethnicity, in contrast to the US centring of race. Given our interest in racialisation processes, we use the term ‘racially minoritised’ in this article, and elsewhere (Williams, 2022), as constructions of group difference not only draw upon notions of race but also ‘related’ concepts like ethnicity, ancestry and culture (Wade, 2014). Where others have referred to ethnicity or ethnic groups, we preserve the original terminology.…”