Australian inquiry on genetic information publishes final report 13/6/03. By the Public Health Genetics Unit The Australian Law Reform Commission and the Australian Health Ethics Committee has published a comprehensive report on the protection of human genetic information in Australia.

The culmination of a two-year inquiry, the 1200-page report, entitled 'Essentially Yours: The Protection of Human Genetic Information in Australia', covers a wide range of contexts in which genetic information is or could be used, including kinship testing, insurance and employment, law enforcement, and medical research and practice.

A major recommendation is the establishment of a Human Genetics Commission of Australia, to provide advice to both the federal and state governments on the implications of advances in genetics and "a consultative mechanism for the development of policy statements and national guidelines in this area". The report recommends harmonisation of the current patchwork of privacy legislation and, interestingly, that this legislation should be extended to cover identifiable genetic samples as well as information derived from them.

Like the UK Human Genetics Commission, the inquiry recommends that there should be a new law making non-consensual genetic testing a criminal offence and that there should be tighter regulation of genetic testing used to establish parentage. In the area of the forensic use of genetic testing, recommendations include strengthened procedures to prevent coercive testing, the development of national minimum standards for the collection, handling and analysis of samples, and (unlike current practice in the UK) the destruction of both samples and DNA profiles once a suspect has been cleared or charges dropped.

The report does not follow the usual line of recommending that insurers should be banned from using genetic test information, arguing that this would be an unjustified departure from the fundamental principle of equal information sharing in risk-rated (mutual) insurance. It does, however, urge that insurers should be obliged to justify their use of genetic information (including family history information) and should provide clear reasons for any unfavourable underwriting decisions. On the other hand, the use of genetic testing by employers should not be allowed, the report states, except in certain situations where it may be necessary to protect health and safety; the new HGCA should draw up guidelines for policy and practice in this area.

In medical research and practice, recommendations include more effective regulation of genetic testing kits, better ethical oversight of genetic samples and information used in research (particularly with respect to the issue of consent for future unspecified research), expanded provision of genetic counselling services, development of nationally consistent standards for population screening programmes, and amendment of the Privacy Act to permit, in some circumstances, disclosure of genetic information to close relatives who are affected by it.

Article courtesy of the Public Health Genetics Unit .