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From single biobanks to international networks: developing e-governance.

机译:从单一的生物库到国际网络:发展电子政务。

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摘要

The future holds the possibility to link and network biobanks, existing biorepositories and reference databases for research purposes in ways that have not been possible before. There is the potential to develop 'research portals' that will enable researchers to access these research resources that are located around the globe with the click of a mouse. In this paper, I will argue that our current governance system for research is unable to provide all of the oversight and accountability mechanisms that are required for this new way of doing research that is based upon flows of data across international borders. For example, our current governance framework for research is nationally based, with a complex system of laws, policies and practice that can be unique to a jurisdiction. It is also evident that many of the nationally based governance bodies in this field do not have the legal powers or expertise to adjudicate on the complex issues, such as privacy and disclosure risks that are raised by cross-border data sharing. In addition, the conceptual underpinning of this research governance structure is based on the "one researcher, one project, one jurisdiction" model. In the conclusion of this paper, I lay out some preliminary ideas as to how this system has to change to accommodate research that is based on networks. I suggest that a move to digital governance mechanisms might be a start to making research governance systems more appropriate for the 21st century.
机译:未来有可能以以前不可能的方式将生物库,现有生物库和参考数据库链接和联网。有潜力开发“研究门户”,使研究人员只需单击鼠标即可访问遍布全球的这些研究资源。在本文中,我将争辩说,我们当前的研究管理系统无法提供这种新的研究方法所需要的所有监督和问责机制,而这种新的研究方法是基于跨国际数据流的。例如,我们当前的研究治理框架是基于国家的,具有复杂的法律,政策和实践体系,可能是某个司法管辖区所独有的。同样明显的是,该领域中许多基于国家的治理机构不具有对复杂问题(例如由跨境数据共享引起的隐私和披露风险)进行裁决的法律权力或专业知识。此外,这种研究治理结构的概念基础是基于“一个研究人员,一个项目,一个管辖区”的模型。在本文的结论中,我就如何更改此系统以适应基于网络的研究提出了一些初步的想法。我建议转向数字治理机制可能是使研究治理系统更适合21世纪的开始。

著录项

  • 作者

    Kaye, J;

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  • 年度 2011
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  • 原文格式 PDF
  • 正文语种 eng
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