People from black communities are three to four times more likely to need a kidney transplant than the general population, but recent research undertaken by UK Transplant shows many black people are still ignorant of the relevance of organ donation to them.
Black people make up 2% of the population, but over 7% of those registered for a kidney transplant are black and, where ethnic origin is known, only 0.3% of those on the NHS Organ Donor Register are black. In addition, relatives of black potential donors are much more likely to withhold consent for donation to take place than for white donors. Indeed, the relative refusal rate for black people is 71%, compared to 35% for white people (UKT Potential Donor Audit 2003-2005).
In 2006, UKT commissioned research to assess attitudes amongst South Asian and black communities towards organ donation and discover how best to reach black and South Asian people. Below are some of the findings relevant to black communities.
Organ donation and the black community
44% of people interviewed agreed with organ donation in principle. 64% of black people were in favour of living donation. In common with the rest of the population, the majority of people (61%) had heard of the organ donor card but fewer black people (43%) were aware of the NHS Organ Donor Register (ODR). Despite the general knowledge of organ donation there was almost no awareness of how the issue was of specific relevance to black people. In fact, the majority of people thought that black people were no more likely than white people to suffer from kidney failure. People from black communities appeared to be distanced from the issue of organ donation and almost none had personal experience of transplantation or donation.
Making the decision to register
When asked what would encourage them to join the register, 21% of black people not already on the register said "helping someone to live". Knowing someone who needed a transplant would encourage a further 14% and 18% simply needed to know how to register. However a substantial number (26%) stated that nothing would encourage them to join the register.
Cultural and religious barriers
To better understand any lack of awareness or resistance to organ donation, the research investigated cultural or religious issues that might act as barriers for black people. While 32% said they had never thought about joining the ODR, 21% of people stated that their religion did not allow it. 10% of people cited burial and funeral customs as a barrier to joining the register. Muslims needed to bury their loved ones quickly after their death.
Other reasons cited were fear of death - 13% of people were superstitious about death - and mistrust of the medical profession - some respondents felt that registering as a donor would mean that not everything would be done to save their lives in the event of a serious illness or accident. In addition, some black people held a fatalistic view that it was in the hands of God to decide who lives or dies, and it was not up to people to intervene by donating organs.
Despite these barriers, black people stated that they agreed that it was important to help their community and "put something back". Also the more religious black people felt that "doing good", helping others and serving their community were fundamental parts of their religious faith. Given that many respondents had initial misconceptions that their faith prohibited organ donation, this is an attractive counter-argument for donation. Also a perceived status within society appears to have an impact on attitudes amongst some black people. They feel marginalised by mainstream society and this affects their willingness to participate in initiatives which are seen to come from mainstream organisations.