I was kindly invited to speak to the University of Glasgow’s sociology department this week about Mix & Match, and used the opportunity to share findings that will be published in the forthcoming paper from the project, exploring in particular the role of patient appeals in donor recruitment.
The paper, which is entitled “Improving the odds for everybody”: narrative and media in stem cell donor recruitment patient appeals, and the work to redress racial inequity, explores the challenges facing patients and families who run appeals, but also considers their important collective nature, given they stand to boost the numbers of registrants for all our potential benefit. It asks about the fairness of placing this hard work into the hands of our most vulnerable, but also invites us to think about ways to ensure that distribution of labour is done fairly and with care.
The presentation Q&A led to some really interesting discussion with colleagues about potential comparisons between patient appeals for stem cell donations, with other kinds of charitable appeals for donations, and the moral economies of ‘deservingness’ that we discuss a lot in relation to, for example, foreign aid charities, but perhaps less so in relation to health (e.g., who deserves sympathy or action in the form of a tissue donation, and how does that cut across ideas about race, health and responsibility?).
I hope to work with stakeholders to use the research presented in this paper to develop some material for patient appeals, that gives a sense of the work involved in them via insights from those who’ve run them before.