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隐私已死——数字时代个人健康信息隐私保护与使用的解决方案。

Privacy Is Dead - Solutions for Privacy-Enabled Collections and Use of Personal Health Information in Digital Era.

作者信息

Ruotsalainen Pekka, Blobel Bernd

机构信息

Faculty of Information Technology and Communication Sciences (ITC), Tampere University, Finland.

Medical Faculty, University of Regensburg, Regensburg, Germany.

出版信息

Stud Health Technol Inform. 2020 Sep 4;273:63-74. doi: 10.3233/SHTI200616.

Abstract

Today's digital information systems and applications collect every day a huge amount of personal health information (PHI) from sensor and surveillance systems, and every time we use personal computers or mobile phones. Collected data is processed in clouds, platforms and ecosystems by digital algorithms and machine learning. Pervasive technology, insufficient and ineffective privacy legislation, strong ICT industry and low political will to protect data subject's privacy have together made it almost impossible for a user to know what PHI is collected, how it is used and to whom it is disclosed. Service providers' and organizations' privacy policy documents are cumbersome and they do not guarantee that PHI is not misused. Instead, service users are expected to blindly trust in privacy promises made. In spite of that, majority of individuals are concerned of their privacy, and governments' assurance that they meet the responsibility to protect citizens in real life privacy is actually dead. Because PHI is probably the most sensitive data we have, and the authors claim it cannot be a commodity or public good, they have studied novel privacy approaches to find a way out from the current unsatisfactory situation. Based on findings got, the authors have developed a promising solution for privacy-enabled use of PHI. It is a combination of the concept of information fiduciary duty, Privacy as Trust approach, and privacy by smart contract. This approach shifts the onus of privacy protection onto data collectors and service providers. A specific information fiduciary duty law is needed to harmonize privacy requirements and force the acceptance of proposed solutions. Furthermore, the authors have studied strengths and weaknesses of existing or emerging solutions.

摘要

当今的数字信息系统和应用程序每天都会从传感器和监控系统以及我们每次使用个人电脑或手机时收集大量的个人健康信息(PHI)。收集到的数据在云端、平台和生态系统中通过数字算法和机器学习进行处理。普及的技术、不足且无效的隐私立法、强大的信息通信技术产业以及保护数据主体隐私的政治意愿低下,这些因素共同导致用户几乎无法知晓收集了哪些个人健康信息、如何使用这些信息以及信息披露给了谁。服务提供商和组织的隐私政策文件繁琐,且无法保证个人健康信息不会被滥用。相反,服务用户只能盲目信任所做出的隐私承诺。尽管如此,大多数人仍担心自己的隐私,而政府声称其履行了在现实生活中保护公民隐私的责任,实际上这一说法已无说服力。由于个人健康信息可能是我们拥有的最敏感的数据,且作者认为它不能成为商品或公共物品,因此他们研究了新颖的隐私保护方法,以找到摆脱当前这种不尽人意状况的途径。基于所得研究结果,作者开发了一种有望实现个人健康信息隐私保护使用的解决方案。它是信息信托义务概念、“隐私即信任”方法以及智能合约隐私保护的结合。这种方法将隐私保护的责任转移到数据收集者和服务提供商身上。需要一部特定的信息信托义务法来协调隐私要求,并促使各方接受所提出的解决方案。此外,作者还研究了现有或新兴解决方案的优缺点。

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