Genetic testing and counseling for kidney disease

Up to 3 in 20 people with chronic kidney disease do not know the cause of their disease. And some people may be diagnosed with the wrong cause of their disease. Knowing the cause of your kidney disease can help you and your ​health care team create a personalized plan to help you manage your disease.  

Many kidney diseases have a genetic cause, spanning from more common conditions like polycystic kidney disease (PKD) to more rare disorders such as Fabry disease. Identifying if there is a genetic cause is crucial as it helps to provide a more accurate diagnosis, ensuring that the treatment you receive is tailored to your specific condition. In addition, this can help you understand the progression of your disease over time. For example, some forms of kidney disease can get worse quickly and lead to kidney failure and some affect your kidneys at a slower pace. This will help you prepare for treatment options for your disease.  

Genetic testing can also help you understand a family history of kidney disease. Half of your genes came from your mother, and the other half from your father and it is possible they passed down a gene variant that causes kidney disease. Genetic tests can give providers more information on how the disease can be inherited or passed down from one generation to the next. Many patients find this information helpful, especially for family planning.  

Genetic testing could also help you see if you are eligible for a clinical trial. Clinical trials are research studies that study the effectiveness of new treatments. Clinical trials may help you learn more about your disease and gain access to new and possibly effective treatments or medicine available only to those participating in the trial.

Genetic testing is a useful tool in understanding why you have kidney disease, and it can guide providers in their treatment decisions.