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Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health
Science and Engineering Ethics ( IF 2.7 ) Pub Date : 2021-04-21 , DOI: 10.1007/s11948-021-00305-w
Dagmar Rychnovská 1
Affiliation  

Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, and field research, three types of framing of risk are reconstructed: data security, privacy, and data misuse. The paper finds that these logics downplay the broader social and political context and reflects on the limits of the practices of anticipatory governance in biobanking. It argues that this regime of governance can make it difficult for biobanks to address possible future challenges, such as access to biomedical data by authorities, pressures for integrating biobank data with other type of personal data, or their use for profiling beyond medical purposes. To address potential controversies and societal implications related to the use of big data in health research and medicine, the paper suggests to expand the vocabulary and practices of anticipatory governance, in the biobanking community and beyond.



中文翻译:

生物银行的预期治理:数字健康中的安全和风险管理

尽管大数据研究在不同领域遇到了多重争议,但大数据在生命科学中的政治和安全影响却很少受到关注。本文探讨了生物样本库中如何预测威胁和风险并采取行动,生物样本库为生物医学样本和数据建立研究库。本文以欧洲最大的生物医学研究协调集群 BBMRI-ERIC 为中心,分析了生物样本库预期话语中的不同风险逻辑。基于文件分析、与 ELSI 专家的访谈和实地研究,重构了三种类型的风险框架:数据安全、隐私和数据滥用。本文发现,这些逻辑淡化了更广泛的社会和政治背景,并反映了生物样本库中预期治理实践的局限性。它认为,这种治理制度可能使生物库难以应对未来可能面临的挑战,例如当局访问生物医学数据、将生物库数据与其他类型的个人数据整合的压力,或将其用于医疗目的以外的分析。为了解决与在健康研究和医学中使用大数据相关的潜在争议和社会影响,本文建议在生物样本库社区及其他领域扩大预期治理的词汇和实践。

更新日期:2021-04-21
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