What do race and ethics have to do with recruiting stem cell donors?
How do appeals to participate in a biomedical project – like donating blood, organs or stem cells – work? What about when appeals engage people specifically because of their racial identity? As part of Wellcome-funded project Mix & Match, I’ve been asking these questions, exploring how racially minoritised stem cell donors are recruited onto the bone marrow stem cell registry.
Stem cells and race
Stem cell transplantations treat patients with blood disorders like leukaemia, but rely on donors and recipients being a genetic match. We inherit our genetic types from our biological parents, so if you don’t have a full sibling who’s a match, the search moves to bone marrow registries – databases of volunteer donors. Here, things get complicated: matches are more likely to be found not in families, now, but between patients and donors of similar ancestral backgrounds. Often, this is described in racial or ethnic terms (e.g., an American registry notes “a person’s best chance of finding a donor may be with someone of the same ethnic background”). Vitally, in the UK, because of the registry’s composition, white people who require a donor from the registry have far better odds of finding one than people of racially minoritised backgrounds. Cue large amounts of recruitment work, often by small charities, to increase racially minoritised registration and improve these odds.
Recruitment is inherently creative
The charities I have worked with in this research are creative in a range of ways that look to draw people emotionally into the act of donor registration, often through storytelling. It might, for example, be through a speech on a stage at an event. One charity worker, a Black man who’s been recruiting since the 1990s, stand in front of a microphone and tells his audience at a Black African church in London that “time is running out for people, especially our people”. I ask him about his approach, and he explains his effort “try to bring your audience with you to experience just a little bit of your pain… and glory” through telling stories of how patients have both died because they couldn’t find a match, or had their life extended by a generous donor. I admit, when I watched him give this speech, I found myself getting choked up by the emotion in his voice and story. This was a feeling he generated in me through his creativity.
Recruitment frames engagement as ethical
By telling stories in this way, this work also frames registration as the right thing to do. It’s something that audiences ought to do because the action could save a life. As Dev Patel, the Slumdog Millionaire actor put it in a video he recorded for a campaign to recruit more donors for a young British South Asian boy (the video also tells this young boy’s story), “there are hardly any donors of Asian origin in the UK, and that's why I'm talking to all you guys today. We need to raise awareness within our communities and around the world”. Registration is always a “need”, something that people ought to do. In other words, registration is framed as an ethical imperative.
Recruitment as an ethico-racial imperative
What I find so sociologically interesting about this creative work isn’t that donation is cast as an imperative. Arguably, all donor recruitment work (be it for stem cells or even money) relies on casting donation like this. Rather, it’s the way race is invoked in tandem with this that is fascinating. Note that it was Dev Patel doing the asking in the video above; a famous British South Asian actor who endeavours to flag the mutual racial identity of both himself, the boy he hopes finds a match, and the audience he hopes is watching, as South Asian. Likewise, the recruiter asking African Caribbean people to register at events is himself Black, and his requests are collective. It is “our people” whose time is running out. In this way, it’s about both ethics and race – something I’ve been thinking of as an ethico-racial imperative.
But we wouldn’t expect a predominantly white audience to be engaged with in this way. Why? Perhaps some racially minoritised audiences might need considerably more convincing to engage with biomedical projects like tissue donation (for a range of reasons I won’t go into today beyond noting that mistrust and exclusion from services is as much an issue in the UK health context as the US). As policy in this area notes, an appeal is thought to be more trustworthy (and thus potentially more effective) if it’s made by somebody who’s seen to share the audience’s minoritised background. This is where it’s potentially valuable to emphasise mutual racial identity, as well as the ethical imperative.
So why is an ethico-racial imperative a useful idea to work with? Firstly, because it prompts us to think about why race becomes an important feature in biomedical appeals (think here about the issue of trust). But it also highlights who is engaged in this work. In short – and I’ll leave you to think about this - why should it continually be racially minoritised people who make these appeals. Isn’t addressing health inequity actually a collective onus borne by us all?
The arguments made in this blogpost are from an Open Access publication in the journal Biosocieties, that is free to read: “It’s harder for the likes of us”: racially minoritised stem cell donation as ethico-racial imperative
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