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在 BBMRI-ERIC 框架下的欧洲生物库重构:迈向全球共享节点?

The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes?

机构信息

Barcelona Science and Technology Studies Group (STS-b). Department of Social Psychology, Universitat Autònoma de Barcelona, Campus de la UAB. Bellaterra (Cerdanyola del Vallès), 08193, Barcelona, Spain.

出版信息

Life Sci Soc Policy. 2020 Oct 1;16(1):9. doi: 10.1186/s40504-020-00105-3.

Abstract

Freezers with biospecimen deposits became biobanks and later were networked at the pan-European level in 2013 under the Biobanking and BioMolecular Resources Research Infrastructure-European Research Infrastructure Consortium (BBMRI-ERIC). Drawing on document analysis about the BBMRI-ERIC and multi-sited fieldwork with biobankers in Spain from a science and technology studies approach, we explore what biobanks are expected to do and become under the BBMRI-ERIC framework, and how infrastructural transitions promote particular transformations in biobanking practices. The primary purpose of biobanks in Europe is presented as being to become mediators in contemporary biomedical research (global sharing nodes) distribution, and distributed nodes of samples and their associated data. We argue that infrastructural transitions are complicated and heterogeneous, giving rise to unattended local concerns on adjusting their practices to fit into the BBMRI-ERIC framework, even for non-members, as the case of Spain illustrates, where "old practices" of collection and storage are questioned. In this article, we aim to encourage qualitative studies to explore the lags between pan-European policies and prospects, different contextual interpretations, and biobanking reconfigurations as an opportunity to explore what that lag is made of (e.g. tensions with "old practices," unresolved conflicts with the national agendas, reservations on a possible centralization of the biobanking practices by regional biobanks, lack of funding, etc.). Such research could enrich not only policy guidance, but also the understanding of technoscientific infrastructures' scalability.

摘要

冷冻器中储存着生物标本,后来在 2013 年成为了生物银行,并在欧洲范围内联网,成为欧洲生物银行和生物分子资源研究基础设施-欧洲研究基础设施联盟(BBMRI-ERIC)的一部分。本研究采用科学技术研究方法,通过分析关于 BBMRI-ERIC 的文件和对西班牙生物银行家的多地点实地调查,探索了在 BBMRI-ERIC 框架下生物银行的预期作用和未来发展,以及基础设施转型如何促进生物银行实践的特定转变。在欧洲,生物银行的主要目的是成为当代生物医学研究(全球共享节点)分配的中介,以及样本及其相关数据的分布式节点。我们认为,基础设施转型是复杂和多样化的,这导致在调整实践以适应 BBMRI-ERIC 框架方面存在未被关注的地方关切,即使对于非成员也是如此,正如西班牙的情况所表明的那样,那里的“旧实践”(收集和存储的实践)受到了质疑。在本文中,我们旨在鼓励开展定性研究,探索泛欧政策和前景之间的差距、不同的背景解释以及生物银行的重新配置,以探索这种差距的构成(例如,与“旧实践”之间的紧张关系、与国家议程的未解决冲突、对区域生物银行可能集中化的生物银行实践的保留意见、缺乏资金等)。这种研究不仅可以丰富政策指导,还可以加深对技术科学基础设施可扩展性的理解。

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本文引用的文献

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Ethics of dead participants: policy recommendations for biobank research.死者参与者的伦理:生物库研究的政策建议。
J Med Ethics. 2018 Oct;44(10):695-699. doi: 10.1136/medethics-2017-104241. Epub 2018 Jun 19.
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Communicating Identifiability Risks to Biobank Donors.向生物样本库捐赠者传达可识别性风险。
Camb Q Healthc Ethics. 2018 Jan;27(1):123-136. doi: 10.1017/S0963180117000457.
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BBMRI-ERIC: the novel gateway to biobanks. From humans to humans.生物银行元数据注册与整合中心(BBMRI-ERIC):生物样本库的新型门户。人传人。
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