ABSTRACT
In response to growing concern within Australian society, the Australian Law Reform Commission (ALRC) has completed two major inquiries dealing directly with the ethical, legal and social implications of human genetic research and the governance of biobanks. The first, in 2003, was concerned primarily with the use of genetic information (Genetic Information Enquiry) and resulted in a report called Essentially Yours: The Protection of Human Genetic Information in Australia (Essentially Yours).1 The second inquiry in 2008, concerned the adequacy of Australian privacy laws and practices2 (Privacy Inquiry) and resulted in a report called For Your Information: Australian Privacy Law and Practice (For Your Information). From the extensive community consultation process that was involved in these inquiries, the ALRC has formulated a number of policy recommendations. This process provides an insight into the relationship between public engagement and policy, and how the findings from community consultation exercises can provide a platform for the development of recommendations. This chapter will discuss the current situation in regard to biobanking in Australia; the nature of the community consultation process carried out by the ALRC; the findings of the ALRC based on the extensive public consultation processes undertaken for both these inquiries; and the ALRC policy recommendations that flowed from these findings.
