Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD
Securing the Data Economy: Translating Privacy and Enacting Security in the Development of DataSHIELD
复制标题
DOI：
10.1159/000336673
复制
发表时间：
2012-01-01
影响因子：
1.7
通讯作者：
Burton, P. R.
中科院分区：
文献类型：
--
作者：
Murtagh, M. J.;Demir, I.;Burton, P. R.
当代生物科学正在看到一种新的数据经济的出现：数据作为其基本的交换单位。虽然在这种新的“经济”中共享数据提供了许多潜在的优势，但个人数据的共享引起了重要的社会和伦理问题。我们研究了一种技术DataSHIELD的持续发展，该技术似乎通过启用共享分析来消除对共享数据的隐私担忧，而实际上并不共享任何个人级别的数据。我们结合联合收割机介绍DataSHIELD的发展与介绍一个民族志研究的研讨会，以测试该技术。DataSHIELD产生了隐私规范的应用，在研究人员的日常活动中实用、灵活且可操作，并且满足了道德委员会的要求。我们证明了通过DataSHIELD运行的分析可以精确地复制标准分析产生的结果，其中所有数据都是物理合并并一起分析的。在开发DataSHIELD的过程中，隐私的道德概念被转化为安全问题。DataSHIELD的开发基于社会实践以及科学和道德动机。因此，DataSHIELD的“成功”同样取决于不仅仅是数学和技术的安全性。版权所有（C）2012 S. Karger AG，巴塞尔
Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new 'economy' provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers' everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the 'success' of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology. Copyright (C) 2012 S. Karger AG, Basel