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Navigating the challenges of Huntington’s disease can place immense emotional and psychological strain on both individuals and families, but you do not have to do it alone. Engaging in a conversation with a genetic counsellor before considering genetic testing is crucial. It ensures that you are well-informed about your options and that you have professional support throughout the entire process – before, during, and after testing.
Many people are unsure of what genetic counselling involves and may feel apprehensive about meeting with someone unfamiliar to discuss their family’s experience with HD. If you have any concerns, please reach out to the team at Huntington’s Victoria. This guide is here to help by providing clear information on what to expect during a genetic counselling appointment, easing any concerns, and helping you feel more prepared.
What Does a Genetic Counsellor Do?
Genetic Counsellors provide information about genetic conditions with the aim to support people to make informed decisions that are right for them. Genetic Counsellors may interpret test results, and communicate the implications of the results, for the individual and their family members.
By breaking down complex genetic information, counsellors ensure that clients understand the nature of genetic conditions, including health impacts, inheritance patterns, and testing options. They also discuss the possible outcomes of test results, whether positive or negative, to help clients fully grasp their choices and identify coping strategies.
Key Reasons to Consider Genetic Counselling
Discuss Genetic Testing
The decision of whether to have testing for Huntington’s disease is a very complex and personal one. There are no right or wrong choices.
- Genetic counselling can help people make informed decisions, adjust to test results and identify coping strategies.
- You do not need to know if you want to be tested before the appointment.
- You do not have to decide whether you want genetic testing at the time of the appointment.
- You do not have to get the test after the appointment.
Discuss Reproductive Options
Some people planning a family may want to discuss ways to have children without passing the mutated Huntingtin gene on to the next generation. This is possible whether the person with the family history of Huntington’s disease has been tested for the mutated gene or not. This can be explained in detail at the appointment, and referrals to the appropriate services such as IVF clinics can be organised.
Discussions with a genetic counsellor can help identify what is best for you. If you decide to go ahead with genetic testing, the number of appointments before testing can vary depending on a person’s circumstances. If someone proceeds with testing, genetic counselling will be arranged to discuss your results. Results usually take at least 4 to 6 weeks.
Organising An Appointment
Some genetics services will require a GP to write a referral for the person seeking genetic counselling. Services will have different waiting times for appointments ranging from a few weeks to a few months, and we recommend contacting them if you would like further details. Click here to find the genetic clinics in Victoria.
Cost $
There is no cost for genetic counselling appointments or genetic testing in Victoria if you are a Victorian resident.
Preparing for an Appointment
Before the appointment
To be able to provide personalised genetic counselling, the genetics service needs to confirm the diagnosis of Huntington’s disease in the family. Knowing where the relative affected by Huntington’s disease or other family members have been seen previously would be helpful. You may need to get consent from a relative with Huntington’s disease or their next of kin.
At the appointment
It’s helpful to bring a support person (often a partner or friend) to at least one of the appointments. Think about bringing someone outside the family so you can focus on yourself rather than having to think about the other person’s feelings about their own situation during the appointment.
Sometimes the person attending the appointment will be referred for additional assessment by a neuropsychiatrist or specialist in Huntington’s disease. The genetic counsellor will work with the individual to identify other relevant specialists that may be helpful.
After the appointment
There will generally be several appointments involved prior to the testing process. Some services have a protocol of meeting with people in at least 2 appointments before testing, while others will tailor this to the needs of each individual.
This page has been prepared in collaboration with:
Marta Cifuentes Ochoa
Associate Genetic Counsellor – Reproductive Genetics
Victorian Clinical Genetics Services
The Royal Children’s Hospital | 50 Flemington Road, Parkville VIC 3052
Customer Care 1300 118 247 | vcgs.org.au