Justice in genomic medicine: Challenges for Australian law and policy

Prof. Belinda Bennett1, Amanda Brown, Elizabeth Dallaston, Fiona McDonald

1Queensland University Of Technology, Brisbane, Australia

Advances in genomic medicine promise new opportunities for diagnosis and treatment of many diseases. In realising the potential of genomic medicine it will be important for the benefits of these advances to reach all parts of the Australian community equally. For this to occur it is important to ensure that genomic research is inclusive and representative of the Australian community. Engagement with populations and communities who are traditionally under-represented in genomic research will be a key part of achieving inclusiveness. At the same time, it is essential that services for genomic medicine are accessible on an equitable basis. This involves addressing geographic, financial, cultural and other factors that may present barriers to access.  The paper uses two examples: (i) biobanking; and (ii) access to genomic medicine to illustrate the justice-related issues that arise in genomic medicine. This paper argues for the importance of a justice-focused analysis in the development of laws and policies for genomic medicine. The paper draws on work being undertaken as part of an analysis of ELSI issues in genomic medicine in Queensland, funded by the Queensland Genomics Health Alliance (QGHA).


Belinda Bennett is Professor of Health Law and New Technologies in the School of Law at Queensland University of Technology (QUT). She leads the Governance and Regulation of Health Care program within the Australian Centre for Health Law Research at QUT.