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生物样本库治理:多样化的秩序模式与民主化

Biobank governance: heterogeneous modes of ordering and democratization.

作者信息

Gottweis Herbert, Lauss Georg

机构信息

Life Science Governance Research Platform/Department of Political Science, University of Vienna, Universitätsstr. 7 (NIG 2.Stock), 1010, Vienna, Austria,

出版信息

J Community Genet. 2012 Apr;3(2):61-72. doi: 10.1007/s12687-011-0070-0. Epub 2011 Dec 7.

Abstract

The great interest in biobanks, the related, substantial investments, and the expectations connected with them raises the question of how to explain the relative successes and failures of contemporary biobank projects. In this article we will present and discuss areas that need ongoing attention by many stakeholders in order stabilize and utilize biobanks and biobank networks in the future. Our aim is to present and utilize an analytical model for comparing structures of biobank governance. The governance model we deduce from empirical case studies is not a well-ordered, almost bureaucratic type of government. The patchwork character and the interrelatedness of heterogeneous activities that constitute biobank governance in its multiple dimensions will be highlighted. Biobank governance should therefore be understood as strategy for patterning a network of interaction that unfolds within and across a number of different fields including a variety of activities that go beyond regulatory activities: the scientific/technological field, the medical/health field, the industrial-economic field, the legal-ethical, and the sociopolitical field. Our account emphasizes that biobanks are not technical visions that operate vis-à-vis an external society. The article discusses attempts to develop participatory governance structures. It concludes that facilitating and managing the integration of a network of more or less interrelated actors, in many nonhierarchic ways, should not be equated with democratization per se, but can nevertheless be regarded as an important step towards a more pluralistic and inclusive style of policy making.

摘要

对生物样本库的浓厚兴趣、相关的大量投资以及与之相关的期望引发了一个问题,即如何解释当代生物样本库项目的相对成功与失败。在本文中,我们将介绍并讨论许多利益相关者需要持续关注的领域,以便在未来稳定并利用生物样本库和生物样本库网络。我们的目标是提出并运用一个分析模型来比较生物样本库治理结构。我们从实证案例研究中推导出来的治理模型并非一种有序的、近乎官僚式的治理类型。构成生物样本库治理多维度的拼凑特征和异质活动的相互关联性将得到突出强调。因此,生物样本库治理应被理解为一种构建互动网络的策略,这种互动网络在包括各种超越监管活动的多种不同领域内和跨领域展开:科学/技术领域、医学/健康领域、工业经济领域、法律伦理领域以及社会政治领域。我们的阐述强调生物样本库并非相对于外部社会运作的技术愿景。本文讨论了发展参与式治理结构的尝试。结论是,以多种非等级制方式促进和管理或多或少相互关联的行为者网络的整合,本身不应等同于民主化,但仍可被视为朝着更具多元化和包容性的决策风格迈出的重要一步。

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