Organ donation, genetics, race and culture: The making of a medical problem (Respond to this article at http://www.therai.org.uk/at/debate)

Abstract

Within transplant medicine in the UK, the relationship between organ donation and ethnicity has been characterized as problematic, with a specific focus on the apparent reluctance of black and Asian people in Britain to act as blood and organ donors. In this article, we show that transplant medicine, in trying to work out a solution to this ‘problem’, has culturalized the issue by treating it as something that falls outside its own domain of practice, with racialized responsibility being entrenched through the mapping of donor pools to cultural difference. We urge a rethink of what is increasingly becoming a one‐sided discussion. A concentration on ethnicity alone fails to take into account the ways in which low donation rates become a problem as a result of the specific ways in which transplant medicine in the UK has been configured and reconfigured over time, constituting different publics along the way. In order to understand the relationship between ethnicity and organ donation, it is important that we as anthropologists examine where and how the problem has in large part been forged (i.e., within transplant medicine), as much as where and in what terms that problem has been fixed in place (i.e., as a problem of black and minority ethnic publics).

Organ donation, ethnicity and the negotiation of death: ethnographic insights from the UK

“…As demonstrated in our findings, discussing the death of potential donors acquires particular form in the context of families who have been represented as problematic constituents for organ donation (Kierans & Cooper, 2011, 2013. In the local research sites, ethnicity and notions of cultural difference were employed as explanatory devices: they were assigned qualities understood to exacerbate the difficulties involved in following the rules around organ donation.…”

“…Taken together, this restricts the supply of suitable organs for minority ethnic populations. In turn, this has generated attention on the relationship between organ donation and ethnicity, evidenced within transplant policy, research, and health promotion initiatives, which generally attribute the reasons for low donor rates to broader 'cultural' and social issues (see Kierans & Cooper, 2011 for critical discussion). Faith-led beliefs about bodily integrity after death and funerary practices have been particularly highlighted as potentially inhibiting organ donation from 'BME' groups (Alkhawari et al, 2005;Davis & Randhawa, 2004;Randhawa, 2012), despite the fact that such concerns have also been expressed within 'white' populations (Haddow, 2005.…”

“…In particular, we have shown that a concentration upon ethnicity within transplant medicine and across health services research often serves to render invisible the institutional processes and activities involved in securing organs for transplantation (see Kierans & Cooper, 2011, 2013.…”

“…In previous work, we have argued that the problems of organ donation should not be reduced to the beliefs and practices of minority ethnic groups alone, but need to be seen within the context of the encounters between various healthcare professionals, families, patients, policies, and technologies within particular Intensive Care and clinical settings (Kierans & Cooper, 2011, 2013. In focusing attention on the particularities of the organ donation encounter within our own ethnographic research, the problems associated with discussing death with 'BME' potential donor families emerged as an important concern for organ donation, and therefore warranted further attention.…”

Problematising the ethics of organ donation after circulatory death in the UK

“…In addition, the commentary is informed by previous ethnographic research conducted with a colleague in the UK, which looked at the institutional production of the 'minority ethnic organ donor' in the context of UK organ donation and allocation practices (Cooper & Kierans, 2016;Kierans & Cooper, 2011. Specifically, this research included…”