In her second blog post, our Genetic Counsellor, Emily Clarke, discusses genetic counselling and the support we provide through our Genetic Disorders Helpline – funded through your incredible support on Jeans for Genes Day.
“When providing information and support through the Genetic Disorders UK Helpline service, I come into contact with many families who could benefit from genetic counselling. It is not unusual for enquirers to be unsure about what genetic counselling is or how they could get to see a genetic counsellor, so I thought it would be useful to tell you all a bit about the role.
Genetic counselling involves a healthcare professional talking to you about a genetic condition or possible genetic condition affecting you, your child or another member of your family. They can assess the situation in your family by taking your medical and family history. They will usually draw your family tree to help with the assessment. They can explain what is known about the genetics of the condition and how it can be passed on in a family. Any options for genetic testing are also discussed and a test arranged if appropriate.
Importantly, genetic counselling also involves support with the emotional and family implications of a genetic disorder. This could be support with coping and adjustment to a diagnosis, or help with how to tell other members of the family about the possibility of the condition being passed on.
A range of healthcare professionals deliver genetic counselling, but it is most often provided by Clinical Geneticists (specialist genetic doctors) and Genetic Counsellors. Genetic Counsellors are healthcare professionals with graduate degrees and experience in the areas of medical genetics and counselling skills. There are about 300 genetic counsellors working across the UK, with the vast majority based in the 24 NHS regional genetic centres. You can find a list of specialist genetic centres on the Genetic Disorders UK website. There will be a genetic centre and genetic counsellor that covers your area.
To access genetic clinics and genetic counselling, you need to be referred to a genetic centre by your GP or hospital specialist. You can find out more about genetic counselling and genetic counsellors on the Association of Genetic Nurses and Counsellors website and the Genetic Counsellor Registration Board website.
You can also call the Genetic Disorders UK Helpline on: 0800 987 8987 or use our website contact page.”