Religion, Organ Donation and Disparities in Transplantation Among Minority Ethnic Groups in the UK

With a high rate of end stage renal failure and a low rate of deceased organ donation, unmet need for kidney transplantation among Black and South Asian populations in the UK is disproportionately high, with these groups comprising 26% of  the active kidney transplantation waiting list. None of the main religious groups in the UK formally prohibits organ donation.  Faith-related barriers have however been linked in previous research with a reluctance to donate organs, although there is little detailed knowledge regarding specific ethnic/faith groups. This study explored influences on donation among minority ethnic groups as part of a wider effort to address the inequality of opportunity to receive transplantation services.

We undertook two qualitative studies: 1) 22 community based focus groups with five ethnic/faith groups: Nigerian (Christian), Caribbean (Christian), Indian (Sikh and Hindu), Bangladeshi (Muslim) and Pakistani (Muslim) origin, and 2) semi-structured interviews with 19 hospital chaplains representing Abrahamic and non-Abrahamic religions.

The centrality and compatibility of religious beliefs with organ donation varied between ethnic/ faith groups and generations. Although few regarded organ donation as prohibited by religious scriptures there was considerable uncertainty, particularly among older people and people of Muslim faith who commonly required guidance from religious leaders. Hospital chaplains generally accepted the principle of donation. However few had much experience of deceased organ donation and many felt they could not personally endorse this, although variations existed within religious affiliations. Concerns included possible delays to burial, injunctions to modesty, a need for bodily integrity at the time of death, and a belief that the body and soul remain sensate for some time after death. These findings illuminate the gap between formal statements by national religious leaders, the views of chaplains and the lay population. Greater engagement between health professionals and local communities, possibly via chaplains, might address disparities.