Legislative Assembly for the ACT: 2003 Week 14 Hansard (10 December) . . Page.. 5060..
MRS CROSS (continuing):
Genetic discrimination is similar to gender, religious or race discrimination because it is discrimination based on an unchangeable characteristic. We have fought against these types of discrimination in Australia for years. Now we need to take the next step.
With the great improvement in forensic sciences and the use of DNA as an important tool in that area, I am concerned that as yet there is little, if any, protection for individuals. Genetic information can give clues to dealing with life-threatening conditions and is an exciting new area for medicine and for the greater good of the community. It must be used with the appropriate safeguards.
A person's genetic information is the blueprint to their very being. Genetic information is actually the DNA that makes people who they are. Every person's DNA gives him or her the characteristics that make people individuals, so genetic privacy needs to be assured. More and more people within the community are expressing concern about this issue and need to feel confident that their genetic information will be safe.
This legislation is aimed at ensuring that there is protection in place for the people of Canberra. People need to be aware of where and how genetic information can and will be used and have the ability to prevent its being used to discriminate against them. It is important for the health of territorians that people feel that taking a genetic test will not have negative repercussions.
Genetic tests can provide many health benefits and we need to ensure that territorians feel happy and safe to take them and be safe in the knowledge that the results will not be used against them. This can only be done through legislating against the misuse of genetic information. The general community has a right to be protected against the unscrupulous use of information procured through genetic technology and we, as legislators, have a responsibility to make sure that this protection is in place.
Genetic information can be used to give an indication of a predisposition to certain illnesses a person may be susceptible to in the future. It can be used to determine the parentage of individuals for use in disputed custody situations. It is vital that this information is used for the purpose of preventing, treating and healing diseases and not as a basis for discrimination. Having an organisation with the capability to hold genetic information is something we need to be very careful about. Having different people able to access our own genetic information leaves us in a very dubious situation.
To get down to the absolute basics, the testing of genetic information is not that reliable as yet. There are far too many false negatives that occur in the current affordable testing process. When it is done with a more economical process, which is what we would expect to be the norm, the information is not as reliable. That means that the genetic information we get is not yet certain or reliable.
The Food and Drug Authority in the United States of America has not accepted genetic information testing for general use because of the unreliability of the actual test and the cost. This organisation allows the use of testing merely to suggest the probabilities of certain diseases occurring. Unfortunately, merely suggesting can lead to deliberate discrimination if the information falls into the wrong hands.