Genomic data sharing: issues in law, research ethics and society

基因组数据共享：法律、研究伦理和社会问题

• 批准号: DP180100269
• 负责人: Prof Dianne Nicol
• 金额: $ 43.16万
• 依托单位: University of Tasmania
• 依托单位国家: 澳大利亚
• 项目类别: Discovery Projects
• 财政年份: 2018
• 资助国家: 澳大利亚
• 起止时间: 2018-01-01 至 2024-12-31
• 项目状态: 已结题
• 来源: https://dataportal.arc.gov.au/RGS/Web/Grants/DP180100269
• 关键词: Genomic; data; sharing; issues; law

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.

该项目旨在为澳大利亚基因组数据共享的最佳实践监管和治理提供建议。基因组数据的共享对于生物医学研究和临床实践至关重要。将使用情景来绘制法律和准法律促进者问题，包括共享障碍，并使用基于证据的流程和法律改革方法来评估其在促进公众信任方面的作用。 对基因组数据共享制定更有效和高效的监管将促进公众信任并鼓励更广泛的数据共享，从而促进科学进步和精准医疗的提供。