Genomic data sharing: issues in law, research ethics and society. This project aims to provide recommendations for best practice regulation and governance of genomic data sharing in Australia. Sharing of genomic data is essential to biomedical research and clinical practice. Scenarios will be used to map legal and quasi legal facilitators issues including barriers to sharing, and to assess their role in promoting public trust, using evidence-based processes and law reform methodology. Developin ....Genomic data sharing: issues in law, research ethics and society. This project aims to provide recommendations for best practice regulation and governance of genomic data sharing in Australia. Sharing of genomic data is essential to biomedical research and clinical practice. Scenarios will be used to map legal and quasi legal facilitators issues including barriers to sharing, and to assess their role in promoting public trust, using evidence-based processes and law reform methodology. Developing more effective and efficient regulation of genomic data sharing will promote public trust and encourage broader data sharing, facilitating scientific progress and delivery of precision medicine.Read moreRead less
Global Citizen Deliberation: Analysing a Deliberative Documentary. The project will enact and film the world’s first truly global citizens’ deliberation, a global citizens’ assembly (GCA) on genome editing, and proceed to analyse the impact of the ‘deliberative documentary’ film on public understanding of complex, fast-evolving science and technology. It will investigate the cross-cultural capacity of citizens to deliberate complex value-laden issues, and so ascertain prospects for an informed g ....Global Citizen Deliberation: Analysing a Deliberative Documentary. The project will enact and film the world’s first truly global citizens’ deliberation, a global citizens’ assembly (GCA) on genome editing, and proceed to analyse the impact of the ‘deliberative documentary’ film on public understanding of complex, fast-evolving science and technology. It will investigate the cross-cultural capacity of citizens to deliberate complex value-laden issues, and so ascertain prospects for an informed global public response to challenges posed by genome editing. Research will test the effects of the deliberative documentary on viewers, examining benefits of communicating complex issues via the work of the GCA. Other benefits include improving public trust in governance and advancing the Australian film industry.
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