Background to the Inquiry

1.1 On 4 December 2002 the Australian Government announced that it would ask the Australian Law Reform Commission (ALRC) to conduct an inquiry into intellectual property issues raised by genetic information.^[1] Soon afterwards, the Government released the Terms of Reference,^[2] signalling the formal start of the Inquiry. The Government’s media releases indicated that an examination of these issues was important because of the rapid advances in human genetic research and genetic and related technologies.

1.2 The ALRC and the Australian Health Ethics Committee (AHEC) had previously identified the need for such an inquiry during the course of their two-year inquiry into the protection of human genetic information. That inquiry, which was initiated in February 2001, had been asked to examine how best to protect privacy, prevent unfair discrimination, and maintain high ethical standards in relation to human genetic information. It was not possible to examine gene patenting issues in that inquiry because of differences in subject matter and the additional time and resources that would have been necessary to do justice to the complexity of gene patenting.^[3] Accordingly, in October 2001 the ALRC and AHEC wrote to the Attorney-General and the Minister for Health and Aged Care to suggest that the intellectual property issues raised by genetics become the subject of a fresh inquiry with its own Terms of Reference. This Report is the outcome of that request.

1.3 The gene patenting Inquiry was conducted independently of the earlier reference on the protection of human genetic information, but the relationship between the projects is nevertheless important. The final Report of the joint inquiry by the ALRC and AHEC, Essentially Yours: The Protection of Human Genetic Information in Australia, was tabled in Parliament on 29 May 2003.^[4] It contained 144 recommendations, addressed to over 30 bodies, in relation to areas as diverse as medical research, health services, employment, insurance, immigration, sport, parentage and law enforcement. The Report made recommendations about how to close emerging gaps in the legal protection of human genetic information so that Australia may harness the benefits of human genetic science and technology, while avoiding the dangers, as we enter a new genetics era. Essentially Yours is referred to, as the need arises, in this Report.