The cultural anatomy of decision making: The 'problem' of organ donation and ethnicity

Cooper, Jessie
The cultural anatomy of decision making: The 'problem' of organ donation and ethnicity. Doctor of Philosophy thesis, University of Liverpool.

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Organ transplantation is considered the optimal treatment for those in kidney failure, yet there is a growing gap between the global demand for transplantable organs and their supply. Transplant medicine has largely concentrated upon solving this problem by securing the willingness of the public to donate their organs after death. In the UK context, attention has been trained upon black and minority ethnic (‘BME’) groups, who make up 28% of the kidney transplant waiting list, yet just 4% of organ donors. Since transplant medicine has traditionally favoured sharing organs between similar ethnic groups, ‘BME’ patients have a greatly reduced chance of receiving a transplant, despite their higher levels of need. Searching for ways to solve this problem, policy and research responses have focused upon understanding the ‘cultural’ barriers which ‘BME’ ‘communities’ present for organ donation, with subsequent interventions aimed at promoting organ donation to these groups. In so doing, minority ethnic groups have been positioned as the cause of transplant inequalities, and handed responsibility for solving an issue originally created within the practices of transplant medicine itself. This study aims to resituate this ‘problem’ by focusing upon the institutional organ donation encounter: where potential donors are decided upon and families are requested to donate their relative’s organs. A multi-sited ethnographic approach was taken to examine the work involved in organ donation in two acute hospital Trusts in the North of England, and wider ‘community’ domains, such as religious temples. Narrative and observational methods were used to understand the experiences of Intensive Care staff and donation nurses involved in requesting donation from minority ethnic families, and those connected to the ‘problem’, such as religious leaders and minority ethnic transplant recipients. Findings reveal (‘BME’) organ donation to be an embedded, negotiated practice, which goes far beyond the willingness, or reluctance, of an individual to donate their organs after death. Instead, this study demonstrates that donation is dependent upon the practices of health professionals, who make decisions on the suitability of dead and dying patients for donation. Moreover, it shows how donation decisions are produced in the negotiations between families and health professionals over the medical diagnosis of death; in the discussions of the immediate and extended family of the potential donor; and by the ability of donation nurse to secure a family’s consent for donation. This study therefore illustrates how the ‘problem’ of ethnicity in organ donation is far from an isolated matter, created as a result of the ‘culture’ of ‘BME’ populations. Instead, it argues that the categories of the ‘BME organ donor’ and the ‘BME donor family’ – as problematic for donation – are maintained and reproduced within the very processes which make organ donation possible.

Item Type: Thesis (Doctor of Philosophy)
Additional Information: Date: 2012-02 (completed)
Uncontrolled Keywords: Organ Donation, Ethnicity, Race, Transplantation, Consent, Ethnography, Practice, Narrative
Divisions: Faculty of Health and Life Sciences > Institute of Population Health
Depositing User: Symplectic Admin
Date Deposited: 04 Sep 2012 10:43
Last Modified: 17 Dec 2022 01:41
DOI: 10.17638/00006393
  • Kierans, Ciara
  • Byrne, Paula