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基因组信息的治理:它会走向成熟吗?

The Governance of Genomic Information: Will it Come of Age?

作者信息

Langlois Adèle

出版信息

Genom Soc Policy. 2006 Dec;2(3):49-63. doi: 10.1186/1746-5354-2-3-49.

Abstract

The completion of the Human Genome Project has opened up unprecedented possibilities in healthcare, but also ethical and social dilemmas in terms of how these can be achieved. Genomic information can be seen as a "global public good" (GPG), in that it is represented by knowledge in the public domain and across national boundaries. Lack of investment, infrastructure and expertise in developing countries means that they are unable to take advantage of these GPG characteristics to address their health needs, fuelling fears of a growing "genomics divide". Some have suggested an international knowledge sharing and capacity building network, a Global Genomics Initiative, as a means to harness the potential of genomics to reduce inequalities in health between North and South. Three UNESCO declarations also call for cooperation between developed and developing countries in genomics research and science and technology in general. Using international relations theories around global governance and networks as a conceptual framework, this paper examines whether these initiatives are likely to succeed in providing effective governance of genomics.

摘要

人类基因组计划的完成在医疗保健领域开启了前所未有的可能性,但在如何实现这些可能性方面也带来了伦理和社会困境。基因组信息可被视为一种“全球公共产品”(GPG),因为它表现为公共领域且跨越国界的知识。发展中国家缺乏投资、基础设施和专业知识,这意味着它们无法利用这些全球公共产品的特性来满足自身的健康需求,从而加剧了人们对日益扩大的“基因组鸿沟”的担忧。一些人提议建立一个国际知识共享和能力建设网络,即全球基因组计划,以此作为挖掘基因组潜力以减少南北健康不平等的一种手段。联合国教科文组织的三项宣言也呼吁发达国家和发展中国家在基因组研究以及总体的科学技术方面开展合作。本文以围绕全球治理和网络的国际关系理论作为概念框架,探讨这些举措是否有可能成功实现对基因组学的有效治理。

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