The Australian Law Reform Commission and the Australian Health Ethics Committee are currently conducting an inquiry into the protection of genetic information. Following the publication of an “issues paper” in October 2001, the inquiry held a series of public meetings, discussion sessions and interviews with experts, as well as reviewing written submissions. This work has resulted in the publication of a 192-page discussion paper that reviews a wide range of applications of genetic information and highlights a set of questions and proposals for further debate. The process will culminate in the submission of a final report and recommendations to the Australian Federal Government in March 2003. Among the inquiry’s many interim proposals are:
The establishment of a Human Genetics Commission of Australia (HGCA), modelled on similar advisory bodies in the UK and Canada, that would advise the national government on the scientific, medical and ethical implications of advances in genetics. It is also suggested that the HGCA would be responsible for approving genetic tests for use by the insurance industry.
The setting up of a system, backed by legislation, to ensure that genetic tests are only carried out on samples obtained from people who have given their consent. Regulation of home-use kits is also proposed.
Harmonisation of state legislation on information and health privacy, to include specific mention and definition of genetic information.
Amendment of federal and state anti-discrimination legislation to clarify its application to discrimination based on genetic status and possible future disability
The development of guidance for best practice in human genetics research, and stringent ethical scrutiny of all such research.
The development of nationally consistent policies and practices for the collection, storage and use of population samples such as Guthrie blood-spot cards
Amendment of privacy legislation to permit disclosure of genetic information to genetic relatives if failure to disclose would place relatives’ life or health at risk
Expansion of genetic counselling services and a possible registration system for qualified counsellors
Enhanced undergraduate and post-graduate education in genetics for health professionals
Development of consistent policies and practices for the introduction and conduct of population screening programmes
A raft of proposals to regulate the use of genetic information (including family history information) by insurers, including an obligation on insurers to provide written reasons if refusing or uprating cover on the basis of genetic information. Insurers would only be able to use genetic tests approved by the proposed HGCA.
Prohibiting an employer from requesting genetic information from an employee or job applicant, unless it can be demonstrated that use of the information will not involve unlawful discrimination.
Enabling police to take DNA samples from people suspected or convicted of a serious office. Consent would be required from “volunteers” providing samples in the course of a forensic investigation. Samples and information derived from a suspect or volunteer would have to be destroyed as soon as practicable after that person had been eliminated from suspicion.