Q: There is a history of HD in the family. What does this mean for me?
A: Huntington’s disease is an inherited neurological condition which is passed down from parent to child. This means that if you have a parent with the defective gene then you have a 50% risk of inheriting the defective gene yourself. If neither of your parents have HD then you are not at risk of inheriting the defective gene.

Q: What is Predictive testing?
A: In 1993 the Huntingtin gene was discovered which allowed for the development of a direct gene test. This means that you can find out whether you have the gene before the onset of symptoms. The predictive test identifies if the HD gene you inherited from your parent is faulty.

Q: I am at risk of HD. Should I be gene tested?
A:  There is no right or wrong answer to this question. Making the decision to be tested is very difficult and not one to rush into.  We recommend that you contact the Predictive Testing Program at the Murdoch Institute to discuss this decision in greater length. They can be contacted on 8341 6200.

Q: I am currently at risk of HD and would like to know my gene status. Who should I speak to about this and what can I expect from the process?
A: If you are at risk of HD and would like to find out if you are gene positive then you will need to contact the Predictive testing program at the Murdoch institute on 8341 6200. As part of this process you will engage in some counselling sessions with a genetic counsellor. They will be able to provide you with further information on the program.

Q: I have a grandparent with HD and my mother/father does not know their gene status. Can I still be tested even if they don’t know their gene status?
A: The answer is yes, however it best to talk to the genetic counsellor at the predictive testing program about this as your gene status will have implications for your parent, particularly if you are found to be gene positive.

Q: I want to start a family but am at risk of HD. Can I still have children without passing on the gene and not know my gene status?
A: Fortunately with the development of IVF this allows you to conceive a child without the defective HD gene and not disclose your own gene status. For further information contact Melbourne IVF on 9473 4456 or the IVF clinic at Monash Medical Centre on 9543 2833