Ethnicity and registration as a kidney donor: the significance of identity and belonging

Studies of attitudes towards cadaveric organ donation have failed to adequately explain the disproportionately low rates of cadaveric organ donation among ethnic minorities. This may reflect an unhelpfully static and narrow definition of 'culture' entailing a collection of predefined cognitive 'beliefs' and 'attitudes.' This paper takes a more integrative approach and considers how ethnicity shapes perceptions of identity and belonging that underpin organ donation discourse among a section of Black British Caribbean people, one of largest migrant groups in the UK. The study is based on 14 in-depth interviews with men and women of Caribbean descent living in south London. Respondents' accounts identified their Caribbean heritage and racial identity as producing a divided sense of loyalty and belonging accompanied by perceptions of discrimination and exclusion from the mainstream society that may have contributed to their lack of trust in doctors and the medical system in relation to organ donation. Furthermore, despite being supportive of kidney donation, death appeared to take on special significance in reaffirming their ethnic identity. This was reflected in their view of the Caribbean as their ideal place of burial and desire that their body should return whole. The study underlines the need for a fresh approach to the understanding of organ donation based on greater knowledge of the construction and significance of ethnic identity and belonging.