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Genetic Testing: A Checklist 2

With Huntington’s Victoria

Supports to consider?

The genetic testing process can be an emotional one so it is important to have a support network available to you. This checklist has been created to help you identify the support you might need. Please refer to our website to find more about the HD Genetic Testing process.

 

 

During the testing process?

  • A genetic counsellor is available through the Genetic Services Clinics who can provide support and assistance with decision-making throughout the testing process. Depending on your circumstances, this could involve 3-5 sessions. At any point during these sessions, you can withdraw from the testing process if you are not ready. 

 

  • Sometimes counselling sessions may not be offered or available when tests are done outside genetic clinics. If this is your experience, contact Huntington’s Victoria so we can link you with counselling support.

 

  • Having a support person (such as a partner, family member, a friend and/or a HV staff) is also recommended during the genetic testing process. This helps not only to feel emotionally supported but also to help you in remembering any information provided during the testing process.
  • Ongoing counselling can be beneficial for many people during the entire process of genetic testing. The emotional support and processing of the journey can be invaluable, as well as the opportunity to discuss any other associated concerns that may arise.

Waiting for the results

  • On average, it can take 6-8 weeks from blood sample being taken to receiving your result. This waiting time can be difficult and stressful. Try to keep yourself busy during this time and and seek support from family, friends and Huntington’s Victoria when required.

 

Receiving and coping with your results

  • On the day of getting your results the genetic counsellor will not know your results in advance, but have them in a sealed envelope. They will confirm if you are definitely ready to know your results however, you are free to delay the appointment and access your results when you are ready.

  • Any result, whether it is positive or negative will have an impact on you and other family members. Give yourself some time to process the information. Avoid making any rushed decisions and seek advice and support when you are ready.

 

 

Should I tell anyone about my results?

  • Only you can decide who to tell and when to tell others about your test results. You are under no obligation to tell anyone you’re not comfortable with. Take the time to process the result yourself and share it when you are ready to people you are most comfortable with. If you are unsure of who to tell your results, when and how, this factsheet may help.
  • Whatever the result, access help and support that is available. HV Information Program can offer confidential information and support to help with your testing experience.