The results of the genetic test that you are about to undergo may provide valuable answers to questions about your illness or an illness in your family. But they can also be used to help provide answers for other people in Australia and around the world suffering from an inherited disease.
Unfortunately, although we know a great deal about the genes that cause the majority of genetic disorders, our understanding of exactly which changes to the sequence of these genes cause disease and which changes can be tolerated by the body is limited. Such insights can only be made by determining the specific changes in the genes of patients known to be carrying certain disorders. This makes the systematic collection and sharing of genetic test results a necessary step for developing our understanding of genetic illness.
The Human Variome Project Australian Node recognises that the decision to share the results of your genetic test is not an easy one. The information in this section of our website may help to answer any questions you might have. Our information leaflet, which you can download below or recieve in printed form from your genetic counsellor is a great place to start.