Department of Public Health, University of Oxford, Oxford, UK.
Hum Genet. 2011 Sep;130(3):377-82. doi: 10.1007/s00439-011-1063-0. Epub 2011 Jul 23.
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.
未来有可能以前所未有的方式将生物库、现有的生物库和参考数据库链接和联网，用于研究目的。有可能开发“研究门户”，使研究人员只需点击鼠标，就可以访问分布在全球各地的这些研究资源。在本文中，我将论证我们目前的研究治理系统无法提供所有必要的监督和问责机制，以支持这种基于跨越国界的数据流动的新研究方式。例如，我们目前的研究治理框架是基于国家的，具有一套复杂的法律、政策和实践体系，可能在特定司法管辖区内是独一无二的。同样明显的是，该领域许多基于国家的治理机构没有法律权力或专门知识来裁决跨境数据共享所引发的复杂问题，如隐私和披露风险。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、一个司法管辖区”的模式。在本文的结论中，我提出了一些初步的想法，说明为了适应基于网络的研究，这个系统必须做出哪些改变。我建议采用数字治理机制可能是使研究治理系统更适应 21 世纪的一个起点。
