Genetic counselling for cardiac genetic tests
What is genetic counselling?
Having been diagnosed with a genetic heart condition, you may be offered genetic testing. Genetic testing is used to determine the underlying genetic cause of your condition.
The outcome of a genetic test may have medical and psychological ramifications for both the person tested and for their relatives. It is important that these issues are discussed and considered before the test is undertaken.
Genetic counselling facilitates these discussions, giving you the opportunity to ask questions and to understand the implications of this test for you and your relatives.
What is a genetic counsellor?
A genetic counsellor is an accredited allied health professional. This requires a master's degree in genetic counselling together with supervised clinical experience. Genetic counsellors are accredited by the Human Genetics Society of Australasia and comply with the relevant professional and legal obligations of healthcare providers in Australia.
Genetic counselling is provided by an experienced cardiac genetic counsellor independently affiliated with the Australian Genetic Heart Disease Registry in Sydney - www.heartregistry.org.au.
What can I expect from a genetic counselling session?
During your phone consultation, your genetic counsellor will discuss with you:
- Your family history
- The process of genetic testing
- The potential outcomes/results of testing
- The limitations of a genetic test
- Consent for testing
- The implications of your result for you and your family
- Links will be provided to appropriate clinical services
All genetic counselling is conducted in accordance with the guidelines of the Human Genetics Society of Australasia, ensuring that high ethical and professional standards of clinical practice are maintained.
What is the process of genetic counselling?
Genetic counselling will be divided into two phone sessions.
- Pre-test counselling, which will occur prior to the genetic test:
- Upon receipt of payment by Sonic Genetics, a genetic counsellor will contact you to arrange a mutually convenient time. Consultation takes approximately 30 minutes
- During this session, your genetic counsellor will answer any questions and address any concerns you may have
- At the end of the session, should you decide to go ahead with the testing, you will be asked to sign a consent form. This consent form will be sent to Sonic Genetics, and they will then proceed with testing your blood sample. Please note that should you choose not to proceed with genetic testing, the test fee will be refunded in part
- Post-test counselling, occurs once you have received the genetic test result from your cardiologist:
- During this session, we will review your result, discuss the possible implications of your result for you and your family and offer advice on further screening if relevant
- You will also be provided with a list of clinics should your relatives wish to seek their own advice
After each counselling session, a written record of your discussion will be sent to both you and your doctor by your genetic counsellor.
What is the relationship between Sonic Genetics and the Australian Genetic Heart Disease Registry?
The Australian Genetic Heart Disease Registry (www.heartregistry.org.au) is a research program investigating the genetic basis of heritable cardiac disease. It is based at the Centenary Institute of the University of Sydney, and is closely affiliated with specialty cardiology clinics at Royal Prince Alfred Hospital in Sydney.
The genetic counsellors involved in providing cardiac genetic counselling through Sonic Genetics are independent accredited practitioners affiliated with the Registry; they are not employees of Sonic Healthcare. There is no formal or implied agreement between Sonic Genetics and the Registry for the provision of these services or other activities.
As part of the counselling process, you may be invited to learn more about the Registry’s research activities, and to potentially provide information to the Registry. You are free to accept or decline the invitation, and you are free to change your mind. Your decision will have no impact on the care provided by Sonic Genetics or the independent genetic counsellors who provide the services described above.
Sonic Genetics provides this genetic counselling at cost i.e. without any additional margin, and the cost is included in the price of our cardiac genetic tests. The genetic counsellors do not receive any inducement to encourage you to proceed with genetic testing i.e. you are free to make your own decision about what you would like to do. If you decide that you do not wish to proceed with genetic testing, we will refund the test fee, less the cost of genetic counselling and an administration fee.