An illustration of two parents and a child being supported on a hand

Genetic counselling

Genetic counsellors are specially trained healthcare professionals with extensive scientific knowledge who spend time talking to families living with inherited conditions.

The aim of genetic counselling is to help individuals and families to understand the condition, make choices, access any appropriate screening or medical treatment, communicate with relatives and find suitable support. Genetic counsellors will often draw a family history, explain relevant inheritance patterns and discuss risks to children. They are also experts at explaining genetic test results.

Although genetic counselling is very different to psychological counselling, genetic counsellors will help families think about the wider implications of finding out about genetic risk or diagnosis. They will be able to support you in making decisions about testing and talk to you about how you are feeling about any issues surrounding this. including.

the risks and benefits of having a genetic test
the results of your test and what they mean for you and your family
the risk of you and your partner passing on an inherited sight loss condition to your children
the risk to you and your children if you are currently unaffected but have a relative living with inherited sight loss
your options around family planning, testing during pregnancy, and assisted reproductive technology if you do not want your children to inherit the condition. Visit our family planning page for more information and links to dedicated support organisations.

How can I get genetic counselling?

If you are living with an inherited retinal condition, genetic counselling will be available to you at a specialist ophthalmic genetics clinic or through your local clinical genetics service. Your GP or local ophthalmologist will be able to refer you; see Ophthalmic genetics clinics. We have also produced some information that you can give to your doctor alongside the list, if you need support in asking for a referral; see For professionals.

If you have a close relative with an inherited retinal condition, your GP will be able to refer you to your local clinical genetics service. It is important to provide information about your affected relative for your GP to include in the referral letter. There are many different forms of inherited retinal conditions and your genetic counsellor will need information about the genetic diagnosis in the family to provide accurate information.