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Accepted Paper:

Social media, patient campaigning, and the (re)constitution of racialised community?  
Ros Williams (University of Sheffield)

Paper short abstract:

Exploring campaigns from racially minoritised cancer patients seeking stem cell donors through analysis of an ethnographic and digital methods study, this paper explores how new digital media–and social media platforms in particular–may (re)constitute the very concept of a racialised community.

Paper long abstract:

This paper takes as its starting point press coverage of a social media campaign to encourage people around the world to register as stem cell donors. Like many similar campaigns, this one focused on a racially minoritised cancer patient in need of, and unable to locate, a genetically matching donor on the stem cell registry. Such coverage generally begins by explaining the (unquestioned) scientific consensus that race determines genetic profiles, before writing that the patient’s mixed-heritage background thus worsens her odds of finding a matching. One article suggests “Biology and culture are both stacked against” the patient, because of her genes, and because mixed-heritage donors are disproportionately few on the registries due to historical disengagement with the biomedical project of donation amongst minoritised groups. The perceived fix? New digital media, that can allow patients such as her to take matters into their own hands, allowing a member of a globally dispersed mixed-heritage ‘community’ to locate others like her, and issue a kind of ethico-racial imperative (Williams 2021) to register as a donor: “Social media”, coverage notes, “can overcome your biological odds”. Supplemented with findings from a ethnographic and digital methods study of racially minoritised cancer patient stem cell appeals, the paper asks: what does all this mean, both for how we understand the notion of a ‘community’–digitised or racialised? What does the ‘democratising’ discourse of new digital media–patients claiming some control over whether they find a matching donor–say about how digital technologies are distributing the work of health equity today?

Panel P20d
Digitalization and the Reconstitution of the Social and Political Realities of Human Being
  Session 1 Thursday 9 June, 2022, -