Dr Fabian Cannizzo1, Dr Rebekah McWhirter2, Professor Alan Petersen1, Prof. Ainsley Newson3, Dr Miranda E. Vidgen4
1Monash University, Clayton, Australia, 2Australian National University, Canberra, Australia, 3University of Sydney, Sydney, Australia, 4Australian Genomics, Murdoch Children’s Research Institute, Parkville, Australia
Biography:
Dr Fabian Cannizzo is a research officer at both the School of Social Science, Monash University and the Faculty of Law, University of Tasmania. His work with the “LINEAGE: Law, sociology and ethics in data governance for genomics” project and associated consortium addresses the ethical, legal and social issue surrounding genomic data governance in clinical, research and translational genomics settings.
Abstract:
Australia is seeking to make efficient use of genomic data for use in research, clinical medicine and population health. However, to enable cross-jurisdictional consistency in data management and access, it will first need to establish a national framework for governing genomic data. While ethical, legal and social issues emerging from the use of genomic data are well understood, a national data governance framework for genomic data still requires local evidence-based support. This presentation aims to contribute to developing evidence towards the development of a national genomic governance framework by identifying how genomic data is governed across clinical, research and biobank settings. We report the results of an interview study about the issues facing a national genomic data governance framework. Our team conducted semi-structured interviews with 40 genomic data experts, such as genetic counsellors, bioinformaticians, clinical geneticists, data governance officers, genomic consumer advocates and research project managers. Interview participants have suggested that realising a national genomic data governance framework will require, at a minimum: (1) addressing differences in clinical and research uses of genomic data; (2) reconciling an individualistic model of consent with communitarian data governance approaches; (3) addressing jurisdictional issues that impact data sharing and transfer; and (4) acknowledging the ongoing cost of hosting and standardising data management practices. We conclude that several trade-offs need to be weighed in the creation of a national framework for genomic data governance, including unification versus specialisation of the framework, and encouraging stakeholder buy-in versus seeking more top-down forms of compliance.