Biomedical Big Data: New Models of Control Over Access, Use and Governance.
Biomedical Big Data: New Models of Control Over Access, Use and Governance.
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DOI：
10.1007/s11673-017-9809-6
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发表时间：
2017-12
影响因子：
2.4
通讯作者：
Blasimme A
中科院分区：
文献类型：
--
作者：
Vayena E;Blasimme A
经验证据表明，虽然人们高度重视控制其数据的能力，但他们在网络世界中越来越多地失去对数据的控制。对个人信息的生成和流动施加控制的能力是自治、隐私和信任等重要价值观的基本前提。在医疗保健和临床研究中，这种能力通常是间接实现的，通过同意特定的信息暴露条件。这些条件可以在知情同意文件中公开说明，也可以隐含在管理患者和医疗保健专业人员关系的保密规范中。然而，随着医疗成为一个数据密集型企业，知情同意和医疗保密作为控制机制受到了压力。在本文中，我们探讨了数据密集型医疗保健和临床研究中新兴的信息控制模型，这些模型可以弥补当前可用工具的局限性。更具体地说，我们讨论了三种有望增加个人控制的方法：作为控制数据访问的手段的数据可移植性权利的出现，作为控制数据使用的工具的知情同意的新机制，最后，新的参与式治理计划，允许个人通过直接参与数据治理来控制他们的数据。我们的结论是，尽管生物医学大数据会削弱个人控制，但新数据管理模式的协同效应实际上可以改善这种情况。
Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it.
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影响因子：
2.7
作者：
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通讯作者：
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