基因组研究和数据共享

S. Jowett, Elizabeth Dallaston, B. Bennett
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引用次数: 0

摘要

本文分析了数据共享和基因组研究的伦理和法律问题。第二部分首先概述了基因组信息的性质,以及与其他形式的健康信息相比,它是否例外。第三部分考虑了数据共享在基因组研究中的作用,第四部分考虑了公众信任对支持基因组研究的重要性。第五部分和第六部分考虑了澳大利亚基因组研究中数据共享的监管框架,第七部分讨论了改革方案。文章的结论是,基因组研究的进步和当前监管框架的复杂性使得审查澳大利亚法律是及时的,以确保它们与这一快速发展的研究领域保持相关性。
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Genomic Research and Data-Sharing
This article analyses the ethical and legal aspects of data-sharing and genomic research. It begins in Part II with an overview of the nature of genomic information, and whether it is exceptional when compared to other forms of health information. Part III considers the role of data-sharing in genomic research, with the importance of public trust in supporting genomic research considered in Part IV. The Australian regulatory framework for data-sharing in genomic research is considered in Parts V and VI, with reform options discussed in Part VII. The article concludes that advances in genomic research and the complexity of the current regulatory framework make it timely to review Australian laws to ensure that they maintain their relevance for this rapidly developing field of research.
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