Genetic disorders affect a large number of people. These disorders include cystic fibrosis, sickle cell anaemia, Huntington disease and fragile X syndrome.
Genetic testing enables scientists to gain an understanding of genes and the causes of genetic disorders, and to be able to develop additional tests for genetic disorders.
The genetic information which is generated by genetic testing raises many ethical, legal and social issues. However, there are established ethical norms for dealing with some of these issues. For example, genetic testing should only be done with the informed consent of the individual, and that person may choose not to be informed of the result of the test.
In 2003, the Australian Law Reform Commission and the Australian Health Ethics Committee published a report on an inquiry into genetic information entitled Essentially Yours: The Protection of Human Genetic Information in Australia. The Inquiry explored a wide range of ethical, legal, social and medical issues associated with genetic information, and made many recommendations to address these issues. Many of the recommendations are being actioned. The Government is also preparing a response to the Inquiry’s report.For further information, you can view the ALRC/AHEC report at http://www.alrc.gov.au/publications/finalreps.htm