Feature

High stakes and kidney donors

There’s a pressing need for organ donation to South Asian patients, yet a lack of donors, say Aamra Darr and Gurch Randhawa

Why is there a severe shortage of kidney donors from the UK’s South Asian population (those originating from the Indian subcontinent), in spite of the fact that a high proportion suffer from renal disease? Some commentators suggest that religious and cultural traditions may be the major determinant preventing South Asians from donating organs for transplantation.

But the findings of an exploratory study published recently indicate that, in the population studied, culture and religion play a much less prohibitive part in determining the level of organ donation than previously thought.¹

There are currently over 5,000 patients waiting for a kidney transplant in the UK. Unfortunately, this treatment is not available to everyone who needs it as there is an ever-increasing demand for a limited supply of suitable organs.

The situation is particularly severe for the UK’s South Asian population with its higher susceptibility to end-stage renal failure resulting in a greater demand for kidney transplants.² With this in mind, the King’s Fund awarded a grant to the University of Luton to conduct an exploratory study to examine possible reasons for the shortfall of organ donors in a cross-section of the South Asian population.

The research was conducted among Hindus, Sikhs, and Muslims in Luton, using a series of eight focus groups and 64 individual interviews. The findings show that the vast majority of the South Asian population studied is at the initial stage of the process of making a decision about donating organs, that of simply knowing that transplantation and organ donation takes place.

Very little debate of pertinent issues seems to have taken place, essential for deciding whether or not to donate an organ. Debate can only occur when people are in a more informed position. The research found general support for organ donation, especially in the light of the specific and urgent problems facing the South Asian communities. There is also a desire to be aware of religious stances towards organ donation so that people can make a more informed decision.

The Muslim respondents were a group which relied particularly heavily on the religious prescriptives in their faith to direct their behaviour over organ donation. They were awaiting a decision by the Ulema to provide guidance as a precedent on this contemporary issue. Another respondent commented that he had studied the Qur’an and deduced that organ donation was permissible. Only four of the 32 Muslim respondents said they thought Islam was against organ donation and two thought it was regarded favourably.

Indecision or unwillingness to donate was not limited to Muslims. A Sikh man commented: ‘I want to be in peace when I am cremated.’ A Hindu man remarked: ‘I would not donate my eyes, ever, because of the ceremony prior to cremation when people come to the funeral to see the body. I don’t want to not have any eyes.’

A comment by a Hindu man sums up the sentiments expressed by most respondents grappling with whether organ donation was in accordance with their faith: ‘Our religion says do not waste things; if they can be utilised and used for the good of other people, then that item should not be thrown away.’

The main reason the majority of people had not decided to donate their organs was that they had not given the issue serious thought. Over the last four years, specific attempts have been made by the Department of Health to attract donors from South Asian communities using ‘ethnically-targeted mass media’ such as videos, leaflets, and posters produced in the main Asian languages. The findings of our study suggest that detailed information related to transplantation has been gleaned only through the experience of people undergoing transplants within the community and has been transmitted through various informal community networks, rather than through the DoH resources.

There is an urgent need to address the high number of South Asians requiring a kidney transplant. In the short term there needs to be a greater number of donors volunteering from the South Asian communities to increase the pool of suitable organs. There are indications, from this initial study, that appeals for South Asian organ donors may be more effective if they take a grass-roots, community networking approach. In the long term, there needs to be greater attention on preventive strategies to reduce the number of South Asians requiring renal replacement therapy.