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Genetic counselling for deafness

Photo: Find out more about the cause of deafness may influence decisions around medical management

Many parents of deaf children are interested in knowing more about the cause of their child’s deafness. Genetics clinicians understand that families vary greatly in how they feel about deafness and they’ll always be led by the family’s questions and concerns rather than make assumptions about how the family feel.

Finding out more about the cause of deafness in the family may influence decisions around medical management. Although the majority of deaf children have no related medical problems, a proportion have a syndromal cause. This means that follow-up checks may be needed in the long-term to monitor the kidneys or the heart, for example. Individual syndromes are rare and discussed here.

Knowing the cause of your child’s deafness may help medical professionals predict whether their hearing is likely to change or stay the same. If they know what the cause is then this might give more information about which part of the ear isn’t working. This can help with decisions about technology options such as cochlear implants or hearing aids, communication choices and education, for example.

If it’s possible to give information about the chance of future children being deaf or hearing then it can help families plan for the future, for example in planning their family or in planning their children’s education.

Clinical genetics services work in conjunction with other services. Different regions around the UK may vary in which health professional you see first to discuss and investigate the possible causes of deafness in your family. However, this is becoming more standardised as a result of national discussions, developments in genetic testing technologies and, in England, national funding for genetic testing through a new National Genomic Test Directory. For more detailed discussion of the recommended aetiological investigations into childhood deafness, see chapter 8 in Understanding your child's hearing tests.

It’s now more common that your paediatrician or audiology doctor/audiologist will discuss and arrange tests for both genetic and non-genetic causes before a referral to the genetics service. Sometimes families are still referred before any or all of the tests are done.

It might not be necessary for your child to be referred onto a clinical genetics service if the tests have already given some clear answers and the other health professionals involved have been able to give you information about what this means for your child and the wider family. However, a genetic counselling appointment can provide additional interpretation, explanation and non-directive support. You can ask your child’s doctor if it would be appropriate and possible for you to be referred on.