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Genetic Tests

Genetic testing is currently not routine for kidney cancer but if there is a strong family history of kidney cancer you may be offered a genetic test. You will need a referral from your GP or specialist. Genetic testing involves a blood test from which your DNA is analysed to find out if you are carrying alternate versions of specific genes (genetic mutations) that can increase your risk of kidney cancer.

Usually a person in the family who has had cancer has the test first. If a cancer gene is found, other members of the family may choose to have a test. Genetic counselling will be offered along side genetic testing to help you understand the information you will receive and its consequences.

Appointments for genetic testing generally take place at your nearest NHS regional genetics centre. The British Society for Genetic Medicine has details for each of the genetics centres in the UK.

Inherited genetic changes have been identified as the cause of increased cancer risk in some kidney cancer–prone families; but are estimated to account for only 5% to 8% of kidney cancer cases overall. It is likely that other undiscovered genes and background genetic factors contribute to the development of inherited kidney cancer.

Kidney cancer occurs in both sporadic (random or environmental influences that cause changes in your DNA) and heritable (genetic mutations passed on from previous generations) forms. The following four major inherited kidney cancer syndromes have been identified and can be tested for:

  • von Hippel-Lindau syndrome (VHL).
  • Hereditary leiomyomatosis and renal cell cancer (HLRCC).
  • Hereditary papillary renal cancer (HPRC).
  • Birt-Hogg-Dubé syndrome (BHD).

In the future it is likely that there will be large developments in the use of genetic testing in the NHS and in our knowledge of the development of kidney cancer. This area is likely to expand and to be of great use to us in the fight against kidney cancer.




Support Line


0800 002 9002

Patient Support

Whether you are recently diagnosed, undergoing or completed treatment for kidney cancer, are a carer, a friend or family of a kidney cancer patient, Kidney Cancer UK is here for you .

For further support call our Careline to talk to a member of our Health team on 0800 002 9002.