Genetic Counselling
If you're offered a genetic test, you may be referred to a genetic counsellor to help you think through what the test means for you and your family.
A genetic counsellor can help you understand:
- the risks and benefits of you having a genetic test
- the potential results of your test and what they mean
- how your family members may be affected if the test shows a serious health condition runs in your family
- the risk of you and your partner passing on a health condition to your children
- your options if you have a child with an inherited health condition and you do not want your next child to inherit it
A genetic counsellor can also direct you to relevant patient support groups.
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.
In the UK, there are roughly 300 genetic counsellors practicing in the NHS. They are highly skilled healthcare professionals with expertise in science, education, counselling and patient advocacy. Increasingly, you will find genetic counsellors working in a diverse range of specialisms including (but not limited to) cardiology, oncology, neurology, rare disease and reproductive genetics.
There are also many genetic counsellors working in research or private practice.