What is genetic counselling?
When you suspect or find out that you, or a family member, has a hereditary syndrome, you will have lots of questions. It is natural to have concerns and worries. If a doctor helped you reach the diagnosis, he or she may be able to answer some of your questions. It is also an excellent idea to look into genetic counselling. Genetic counselling is a service that is offered by trained individuals, usually with specialised graduate degrees. Their goal is to offer families an idea about what it means to have a genetic condition, to identify family members who are at risk, to outline local resources and policies, and to help find information if needed.
The advice on this page is based primarily on experiences in the UK, US and Canada.
Why see a genetic counsellor?
Knowing that you have a genetic syndrome in your family means that you have many things to consider, as well as taking care of your symptoms. You may want to think about telling other family members, and letting them know how they could be tested to see if they also have the mutation. If you have children, you may want to think about how they could be affected by a positive diagnosis. You may have concerns if you are planning a family (see also Prenatal and Pre-implanatation Genetic Diagnosis for more information). Other issues, such as choosing a private health insurer, vary from country to country and may also be important to consider.
A genetic counsellor will not necessarily be a specialist in BHD syndrome or rare kidney cancer, but they will be familiar with the overall issues and may be able to help you find a BHD syndrome specialist. Even without specific knowledge about BHD syndrome, a genetic counsellor will still be able to offer families valuable guidance about how best the family can approach their own situation, and will be able to help the family find answers to questions about BHD syndrome.
Practical information
Telephone or email consultations
Many counsellors prefer to meet in person. However, telephone, email or Skype videoconferencing are becoming available.
Paying for a Genetic Counsellor
Genetic counselling may be covered by your private healthcare plan, or your public health service: you will be able to check with your local doctor, hospital or insurer (if any). For private counselling, fees vary by country.
Finding a Genetic Counsellor
Links for finding a local genetic counsellor are provided below. Depending on your local situation, it may be preferable to first ask your doctor to refer you to a genetic counsellor.
International
- Orphanet Directory (covers European countries and some neighbouring countries)
- International Clinic Directory
- Genetic Counselling Services page by the World Health Organization (WHO)
Europe
- Orphanet Directory (covers European countries and some neighbouring countries)
- Denmark: Genetic counselling centres
- UK: Medical Genetics Centres, Regional Genetics Centres, NHS guide to genetic counselling
Australia
- Clinical Genetics Services
- Genetics Services of Western Australia pamphlet
- Familial Cancer Programme of Western Australia pamphlet
Canada
Hong Kong
United States
First ask your local primary care physician if he or she can find a local genetic counsellor for you. You will need a referral from your primary care physician to get insurance coverage for genetic counselling.
- Zip code search from National Society of Genetic Counsellors
- National Cancer Institute, Directory of Genetic Service Professionals
Have any outstanding questions you’d like to ask or any advice for anyone new to these issues? Why not post your advice or questions on our Forum?
