New NHS test provides more certainty for potential Black living donors

NHS England has approved a new genetic test that could flag up variations of a gene which is linked to developing kidney disease, providing more certainty to potential living kidney donors. The gene variation is more common in people of African and Caribbean heritage.

Everyone has two copies of the APOL1 gene, which creates proteins that play a role in the body’s immunity to disease. Some people have a mutation in one or both of their copies of the gene which is linked to increased protection from a parasite that causes Human African trypanosomiasis (HAT), or sleeping sickness. However, this mutation has also been associated with a higher risk of developing kidney disease.

For people with two copies of the high-risk version of the gene, the chances of developing kidney disease are still only 1 in 5 as long as they do not donate a kidney. However, if they decide to become a living kidney donor, research suggests that number increases to 3 in 5.

It is hoped that this simple blood test will allow potential donors and their medical teams to be better informed about the risks of donation. People found to be in the high risk group would be advised not to donate one of their kidneys.

A third of people waiting for a kidney transplant in the UK are from Black, Asian and other minority ethnic groups, according to NHS Blood and Transplant.

The average waiting time for a kidney transplant is around two years, but people in these groups can wait even longer to find a suitable match. Kidneys are matched by blood group and tissue type, so often the best match will come from a donor of the same ethnic background.

The test will be available from NHS England from 1 April, while patients in Scotland, Wales and Northern Ireland will be able to use existing testing pathways.

More information on APOL1 testing can be found on the British Transplantation Society's website: