Prioritising existing donors to receive organs would boost donation from ethnic minoritiesBMJ 2013; 347 doi: https://doi.org/10.1136/bmj.f5036 (Published 20 August 2013) Cite this as: BMJ 2013;347:f5036
- Adnan Sharif, nephrology consultant, Department of Nephrology and Transplantation, Renal Institute of Birmingham, Queen Elizabeth Hospital, Birmingham B15 2WB, UK
In December 2006 the British government set up an organ donation taskforce to identify barriers and solutions to boosting organ donation in the United Kingdom. The recommendations, published in January 2008,1 were intended to rectify one of the worst organ donation rates of any country in Western Europe.
Boosting organ donation from deceased donors by 50% within five years was a laudable aim. Achieving this target in 2013 has therefore been a notable success, although it is too early to ascertain whether the increase in organ quantity has come at the expense of a decrease in organ quality. In addition, over the past four years the number of registrants to the organ donor register (ODR) has increased by 30%, and the numbers of deceased and living donors have risen by 35% and 23%, respectively.2
However, since publication of this report there has been a huge failure to boost organ donation from members of black, Asian, and other minority ethnic communities. It is a similar story with the registration of donors for blood stem cell transplantation, with severe shortages of minority ethnic donors skewing the cell type matches available.
Ethnic minorities constitute 10.8% of the UK population but are over-represented on organ waiting lists (24%) and under-represented on the ODR .2 3 Of actual organ donors, only 4.2% are from minority ethnic backgrounds.3 Although minority ethnic registrants on the ODR increased by 61.3% between 2008 and 2012, the actual numbers remain small (73 512 on 31 March 2008 and 118 598 four years later), and the increase equates to only 2.8% and 3.5%, respectively, of all registrants with known ethnicity.
Relatives of non-white people are also less likely than white people to give consent for organ donation from loved ones who have died in appropriate circumstances for donation (30.3% v 68.5% for donation after brain death).2
For these reasons minority ethnic people have longer median waiting times for organs.2 This is predominantly a consequence of biological differences between ethnic groups because of disparate frequencies of different blood groups and particular combinations of alleles for human leucocyte antigen found in members of different ethnic communities.
Simply pushing for more registrants on the organ donor register is not the solution because only a third of eventual donors are actually registered at the time of their death (37% in the financial year 2011-12).3
A new approach should be to tackle the elephant in the room: the problem of apathy or so called free riders—people who are happy to receive an organ but not to donate.
Lavee and colleagues outlined a novel Israeli approach to this phenomenon in 20104: prioritisation for transplantation is given to previous actual donors or those registered for at least three years to be donors. Israel has subsequently benefited from a boost in organ procurement and a reduction in organ waiting lists5 (although this cannot be solely attributed to the prioritisation clause because other relevant laws were concomitantly enacted and a large public awareness campaign initiated).
The prioritisation approach raises ethical difficulties, such as coercion, religious constraints, or strategic behaviour,6 and translating such a policy to the UK would be fraught with challenges. Consideration of a similar system would require adequate resources and publicity to ensure ample public awareness of embedding incentives in the new allocation system.
However, developing a prioritisation system for organ and stem cell donation has inherent fairness for all—not just for minority ethnic people. Although it would positively affect the general population it would also likely serve as an impetus for minority ethnic people, who will have an even longer wait under a prioritisation system if they do not commit. Raising awareness of organ and stem cell donation among minority ethnic communities, such as with the Kidney Research UK peer educator model of targeted community based education, would have more impact if prioritisation was introduced because it has personal implications. Minority ethnic people cite many concerns about organ donation relating to distrust, or religious or sociocultural issues,7 8 9 10 but these concerns don’t seem to arise when the situation is reversed—to the receiving of an organ or stem cell transplant. That someone can be fundamentally opposed to donation but conversely be receptive to receipt is dissonant—one cannot, and should not, exist without the other. Introducing priority points in allocation scoring systems would reduce this incongruity.
The strategic planning by NHS Blood and Transplant for the next few years has made boosting donation from minority ethnic people a priority. Although NHS Blood and Transplant encouragingly raises hopes of promoting a national debate on reciprocity in its strategic plan up to 2020, there seems little enthusiasm for championing such a dynamic yet controversial allocation system at executive level.
However, the organisation must appreciate that it is unlikely that organ and stem cell donation from minority ethnic communities will substantially improve by 2020. What has not been fruitful so far is unlikely to reap any great benefits in the immediate future. Introducing prioritisation would be one step to overcome apathy in organ and stem cell donation and it must be actively explored.
Cite this as: BMJ 2013;347:f5036
I thank the following colleagues from the National BAME (black, Asian and minority ethnic) Transplantation Alliance for critical appraisal of this article: Anthony Warrens, Gurch Randhawa, Myfanwy Morgan, Richard Davidson, and Orin Lewis, as well as those who preferred to remain anonymous.
Competing interests: I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: I am a member of the South Asian Health Foundation and the National BAME Transplantation Alliance. This work has been produced independently of any influence by or affiliation to either of these organisations.
Provenance and peer review: Not commissioned; externally peer reviewed.