Hundreds of potential kidney donors of Black African and Black Caribbean heritage can now get a simple blood test through the NHS 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.
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.
Dr Bailey comments: “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.”