Family testing for Wilson’s disease
If someone has Wilson’s disease, their close family should have tests to see if they also have it.
Wilson’s disease can cause hidden liver and brain damage. But early testing and treatment can stop it.
So it is important that anyone who might be at risk gets tested.
The information on this page is for:
- Adults and children with Wilson’s disease or suspected Wilson’s disease
- Parents of children with Wilson’s disease or suspected Wilson’s disease
- Family, friends, carers, and healthcare professionals
On this page:
Who should get tested for Wilson’s disease?
When someone has Wilson’s disease, their close family should have tests. This includes blood relations such as:
• Brothers and sisters
• Children
Each brother or sister has a 1 in 4 chance of also having Wilson’s disease.
In some cases, doctors will also ask to test a child’s cousins.
Find out more about how Wilson’s disease is passed on in families.
How are family members tested for Wilson’s disease?
The medical team will:
• ask questions to check for symptoms, even if they are very mild
• do blood and urine copper tests
• do blood tests to check on the liver
When tests suggest someone may have Wilson’s disease, doctors may do a genetic test. This looks for the gene change seen in the family member with Wilson’s disease.
Find out more about tests for Wilson’s disease:
What happens if family testing shows Wilson’s disease?
If family testing finds that someone has Wilson’s disease, they will have tests, treatment and regular checkups.
People diagnosed this way may have no symptoms. They will have more tests to check for any early signs of damage in their liver or brain.
If there is a build-up of copper, they should start treatment to get rid of it.
If there is not much build-up yet, then they can have medicines such as zinc. The medicines aim to reduce how much copper someone gets from their food. And prevent copper build up.
Everyone with Wilson’s disease should have regular monitoring. Even if they have no symptoms.
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How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
Everyone’s experience of Wilson’s disease will be different. Always talk to your specialist medical team for personal advice.
Our information aims to be clear, up-to-date, and useful. We work with people living with liver disease and clinicians to make our information.
The main source for this information is: EASL-ERN clinical practice guidelines on Wilson’s disease, 2025
This content was last reviewed: December 2025
We would like to thank all the patients and families who helped to create this information. Thank you to our clinical reviewer, Dr William Griffiths, consultant hepatologist, Cambridge University Hospitals NHS foundation trust.
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