Genetic Counselling

What is a Genetic Counsellor?

Genetic counsellors can give people information about genetic conditions and how they are inherited, and they work very closely with clinical geneticists. Clinical geneticists are qualified to diagnose genetic conditions.

The role of a genetic counsellor is to help a family to understand better the implications of a diagnosis of a genetic condition in a family. This includes helping the family to understand who else in the family might be at risk and how the condition is inherited. They may also help the family to make decisions about management of the condition.

For certain forms of EDS, there are tests available during pregnancy, and some people may wish to discuss these with their genetic counsellor. By exploring available options, families can make their own informed decisions about pregnancy and other matters.

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What are the possible benefits of genetic counselling?

Families who have had genetic counselling report that it can help them to:

Gain a better understanding of the condition in the family.
Make decisions about the condition in the family.
Talk about the condition to other people in the family who might be at risk.
Take action to better manage the family condition.
Communicate with health professionals, teachers, social workers etc. about their needs.

Different people may handle genetic information in different ways, depending on their own personal beliefs and their past experiences.

Genetic counsellors can help individuals to make their own decisions in the context of their own unique medical, moral and social situation.

EDS National Diagnostic Service

The Ehlers-Danlos Syndrome National Diagnostic Service is a specialist service for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome (EDS).

Established in 2009 it is a highly specialised service commissioned by NHS England and runs two clinics for patients at Sheffield Northern General Hospital and the Northwick Park & St Mark's Hospitals in London.

Page last reviewed: 01 July 2023

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