NHS rolls out national genetic test to reduce risk of donor kidney failure

Hundreds of potential kidney donors of Black African and Black Caribbean heritage can now get a simple blood test to help reduce the risk of kidney failure.

The test is part of national genetic testing available on the NHS and will help identify if potential donors carry genes that mean they have a high risk of kidney disease after donation.

The NHS plans to carry out around 160 tests a year to identify people with ‘high-risk’ variants of a gene known as ‘APOL1’, common in people of Black African and Black Caribbean, and the test will help clinicians assess donor suitability and future risk of kidney failure.

Following APOL1 testing, those shown to be at high risk of developing kidney failure later in life, and who are under 60 years old, will be advised against kidney donation.

The genetic test for potential donors could also help prevent future kidney disease and reduce healthcare inequalities among people of Black African and Black Caribbean heritage who are more likely to develop kidney disease than those of White heritage.

Those found to be at higher risk of kidney disease will be able to receive regular monitoring and kidney check-ups as well as given advice around lifestyle changes and diet which can help reduce their risk of developing kidney disease in the future.

Each year around 1,000 people choose to donate one of their kidneys to someone with kidney failure.

People with two parents of Black African and Black Caribbean heritage are more likely to have kidney failure and to need a transplant than people of White heritage.

Research shows around three in five people with two high-risk genes develop kidney disease after donating a kidney.

The genetic test will look for the genes in all people of Black African and Black Caribbean heritage who are considering donating a kidney to help assess whether potential donors are at a higher risk of developing kidney failure in later life, providing more information about their suitability for donation – around 500 tests are expected to be undertaken over the next three years.

The test has been made available nationally after a request was made by members of Bristol Health Partners’ Kidney Disease Health Integration Team working at the University of Bristol and North Bristol NHS Trust.

Testing is now available across the country with samples being sent to the South West and South East Genomic Laboratory Hubs for analysis.

The initiative is part of wider work to embed genomics in the NHS, including how genomic medicine can best serve diverse communities and reduce health disparities.

Amanda Pritchard, Chief Executive of NHS England, said: “It’s great news that this simple blood test on the NHS will help protect donors of Black African and Black Caribbean heritage who are selflessly coming forward to try and save lives.

“We know kidney failure disproportionately impacts people from Black African and Black Caribbean heritage and this genetic test will not only help keep potential donors safe from future kidney disease, but it will also enable NHS staff to monitor those most at risk, which could ultimately improve hundreds of lives.

“This is just the latest example of how the NHS is harnessing the full force of genomic medicine to prevent future ill health, improve the lives of patients and, at the same time, to address healthcare inequalities to improve the lives of all NHS patients.”

Professor Bola Owolabi, Director of the National Healthcare Inequalities Improvement Programme, NHS England, said: “This is a great step forward in narrowing the gap in kidney health and tackling healthcare inequalities faced by Black African and Black Caribbean donors. This new genetic test will help make kidney donation safer for those who are generously willing to help others, while also enabling the NHS to help donors live longer and healthier lives.”

Professor Dame Sue Hill, Chief Scientific Officer for NHS England and Senior Responsible Officer for NHS Genomics, said: “The NHS is a world leader in genomics and has helped to change the lives of millions of patients and their families, by ensuring that they have access to the diagnosis, treatments and care they need. 

“This national offer of genomic medicine is also there to serve the needs of our diverse communities. By introducing APOL1 testing, we can now help protect the kidney health of people of Black African and Black Caribbean heritage when they are generously considering donating a kidney. This is a prime example of how genomics can play a part in reducing health inequalities across England.”

Dr Pippa Bailey, Associate Professor at the University of Bristol and Consultant Nephrologist at North Bristol NHS Trust and Dr Natalie Forrester, Consultant Clinical Scientist at the South West Genomics Hub, requested for the test to be added to the National Genomics Test Directory.

Pippa said: “Thanks to this testing being approved by NHS England we can now identify people who could be at a higher risk of developing kidney disease if they donate a kidney and therefore advise them against kidney donation. At the same time, we can reassure those who are not at high risk.”

“The new test provides people of Black African and Black Caribbean heritage with personalised information about the risks of kidney donation which helps to reduce cases of kidney failure in kidney donors. It also allows us to reassure low-risk donors which may help to redress ethnic inequity in living donor kidney transplantation.”

Dr Celia Duff-Farrier, Principal Clinical Scientist and Renal lead for the South West Genomics Laboratory Hub, said: “It’s fantastic that we can now offer APOL1 gene testing through the NHS. In the short time we have been running this service we have already identified numerous high-risk individuals, providing hugely valuable information to support transplant decisions and improve patient lives.”

Dr Dela Idowu, 65, from Northwest London, who had APOL1 testing through the South East Genomic Laboratory Hub, said: “My brother Tayo and I are very close so, when he told me he had chronic kidney disease and would need a kidney transplant, I offered to be his donor. For me, it was a no-brainer. I wanted him to live a full and healthy life, and I didn’t want him to spend years on dialysis which is often the case for Black patients due to the lack of Black organ donors.  

“Although I was a perfect tissue match and the same blood group, the results of an APOL1 test sadly showed it was too risky for me to be my brother’s donor – although this was heartbreaking, he was eventually able to get a successful transplant from another donor.

“I now have an annual kidney health check with my GP because of the results of my test. I did not think twice about having it and would definitely encourage anyone of Black African and Black Caribbean heritage considering being a kidney donor to have the test. It’s so important to know if it’s safe to donate or not.”

Professor Derek Manas, Medical Director for Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said: “NHS Blood and Transplant welcomes the news that NHS England has now approved APOL1 testing which is now available nationally on the NHS – this will provide more certainty to people of Black African and Black Caribbean heritage who are considering donating a kidney and improve the assessment and communication of donor risk in the evaluation of donors of African origin.”

Health Minister Baroness Gillian Merron said: “This rollout is a transformative step forward which will reduce health inequalities and help save lives.

“Kidney donation is a profoundly generous act, and the genetic test will make sure this decision is made with the utmost care for both donors and recipients.”