What is genetic counselling?
Genetic counselling is defined as ‘a communication process which deals with human problems associated with the occurrence or the risk of occurrence, of a genetic disorder in a family’ (American Society of Human Genetics, 1975).
What is the purpose of genetic counselling?
Genetic counselling aims to help the individual or family:
- understand the information about the genetic condition
- appreciate the inheritance pattern and risk of recurrence
- understand the options available
- make decisions appropriate to their personal and family situation
- make the best possible adjustment to the disorder or risk
What does genetic counselling include?
Genetic counselling provides families at risk of or affected by genetic disorders with the information and support they need to make important decisions about genetic testing, screening and options for having children.
With regards to making decisions, genetic counsellors do not ‘give advice’ or tell you what to do. They do explain all the possible scenarios and options available together with their pros and cons then support you in making the decision that is best for you.
Genetic counselling is not a psychological therapy, however, counsellors are able to refer you on to further psychological support should there be a need and interest.
When is genetic counselling appropriate?
Genetic counselling may be appropriate for the following situations:
- When considering having a genetic test
- After having carrier testing and finding out you are a carrier
- Where both members of a couple are known carriers of the same ‘recessive’ disorder.
- If you are worried about a family history of a known genetic disorder, or a strong family history of another health problem, e.g. Cancer
What is the value of genetic counselling?
Because genetic testing is a very personal decision with potentially many far-reaching consequences, it is helpful to discuss its impact beforehand with an informed, objective source.
In addition, due to the rarity of most genetic disorders, many doctors (non-geneticists) may not recognise a genetic disorder or have much in-depth information about it. Discussing a genetic condition with a geneticist or a genetic counsellor can help determine a diagnosis, even when the majority of medical care is done by other specialists.
How do I get referred to a Genetic Counsellor?
If any of the above situations are relevant to you, you can ask your GP to you refer to your Regional Genetics Service. In the UK, Genetic counsellors work within the NHS in regional Clinical Genetics departments.
A list of the NHS genetics services can be found here
Other related resources
This website, of the British Society for Genetic Medicine (BSGM), provides a directory of UK genetic centres. The BSGM is an independent body representing UK genetics professionals.
Using the directory, your local genetic centre can be identified and contacted to arrange a meeting with one of their genetic counsellors.
National Telephone: 0121 627 2634
BACP members are individuals and organisations concerned with counselling in a variety of settings. The organisation publishes directories of counselling services and will refer enquirers to a local counsellor free of charge.
Tel 01455 883300
ARC is the only national charity which provides non-directive support and information to expectant and bereaved parents throughout and after the antenatal screening and testing process.
Telephone helpline: 020 7631 0285
HFEA is a non-departmental Government body that regulates and inspects all UK clinics providing IVF, donor insemination or the storage of eggs, sperm or embryos. It licenses and provides information on UK fertility clinics and centres carrying out in vitro fertilisation (IVF), other assisted conception procedures and human embryo research.
This charity helps bereaved children and their families to get the best possible help, recognition and understanding following their loss. They provide information, signposting and a helpline, and can provide counselling via children’s workshops, one-to-one or for the whole family and also offer consultancy work to inform and empower professionals.
Telephone: 020 8446 7452