Migrant and ethnic minority groups across Europe have a rising demand for organ transplantation, particularly renal transplants.
Migrant and ethnic minority groups have a significant and growing need for transplants (1). The high burden of disease is associated with risk factors such as diabetes and low socioeconomic status. Nevertheless, the proportion of organ donors is low (1). Blood and tissue types differ between ethnic groups but are more often shared by close family members and people of the same ethnicity.
Ideally, donors should be as diverse as the recipient population. In the United Kingdom, non-white ethnic minorities – mainly of Indian, Pakistani and Caribbean descent - comprise 11 % of the population, 7 % of organ donors, 35 % of people awaiting a kidney transplant and 21 % of people who died on the waiting list (2).
Norway has an increasingly diverse population. Many non-white migrant and ethnic minority groups, largely of Somali, Pakistani, Syrian, Iraqi and Eritrean descent, share many of the same risk factors for end stage renal disease, though currently protected by a younger age demographic.
Little is known about ethnicity and organ donation in Norway because ethnicity data is not routinely collected, and where this is done only country of birth is recorded (3).
Organ donation from deceased donors
At the end of life, religious beliefs, cultural perspectives and language can be barriers to informed discussion about organ donation between clinicians and the family. It is important to note that none of the world’s major religions forbid organ donation (4).
The transplant legislation, revised in 2015, emphasises the wish of the deceased (5). Where the individual’s preferences are unknown, views of family members are decisive. In 2018, there was one case of family refusal for every third deceased person eligible as an organ donor (6). We do not know the ethnicity of potential donors and therefore we have no breakdown of refusals by ethnic group. In the United Kingdom refusal rates are 50 % higher amongst migrant and ethnic minority groups than in the wider population (7).
Clinicians, especially in intensive care units, have a vital role in increasing organ donation from deceased donors. Multi-level interventions, including national communication campaigns, training of specialised health personnel, using interpreters and providing written material in different languages, can all help facilitate conversations between clinicians and family members (1).
Organ donation from living donors
In Norway, live organ donors account for a quarter of renal transplants in Norway, and typically these last longer, are less likely to be rejected and are safe for the donor.
Ideally, donors should be as diverse as the recipient population.
Live organ donation appears to be rare amongst migrant and ethnic minority groups, who then rely upon organs from deceased donors (8). British transplant physician Adnan Sharif has described a paradox in terms of the current situation: “Minority ethnic people cite many concerns about organ donation relating to distrust, or religious or sociocultural issues, but these concerns don’t seem to arise when the situation is reversed—to the receiving of an organ or stem cell transplant” (9).
Promoting live organ donation amongst migrant and ethnic minority groups requires the direct involvement and empowerment of these individuals. Acknowledging and addressing their concerns can ultimately improve clinical outcomes while protecting the principle of voluntary reciprocity.
Opportunities for the future
It is over a decade since the report by the Norwegian National Working Group on Organ Donation was published, and a revision is due (10). This presents an opportunity to consider the needs, perspectives and contributions of different ethnic minority groups. Ultimately, our coordinated efforts can help realise the remarkable potential of organ donation to save and improve lives.