公共卫生疾病监测数据共享:下一个伦理前沿。

IF 3.1 Q1 Arts and Humanities
Patty Kostkova
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引用次数: 41

摘要

近年来,我们目睹了公共和全球卫生领域的数字革命,为疫情情报和突发公共卫生事件创造了前所未有的机会。然而,这些机会创造了一把双刃剑,因为数据访问、质量监测和保证以及数据隐私的治理和监管框架都落后于技术成就。在本文中,我们确定了三个道德挑战:在各种早期预警工具之间共享数据以支持风险评估。其次,确定公共卫生数据共享法律框架需要解决的挑战,以释放人口层面数据集在不影响公民隐私的情况下用于研究的潜力。第三个挑战是对IT行业在操纵用户数据方面的更严格监管——欧盟将于2018年5月实施GDPR。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Disease surveillance data sharing for public health: the next ethical frontiers.

In the recent years, we have been witnessing a digital revolution in public and global health creating unprecedented opportunities for epidemic intelligence and public health emergencies. However, these opportunities created a double edge sword as access to data, quality monitoring and assurance, as well as governance and regulation frameworks for data privacy are lagging behind technological achievements.In this paper we identify three ethical challenges: sharing data across various early warning tools to support risk assessment. Secondly, define the challenges to be addressed by the legal frameworks for public health data sharing to unlock the potential of population-level datasets for research with no impact on citizens privacy. The third challenge lies with stricter regulation of the IT industry with regards to manipulating user data - such an initiative, GDPR, comes to force in the EU in May 2018.

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来源期刊
Life Sciences, Society and Policy
Life Sciences, Society and Policy Arts and Humanities-Philosophy
自引率
0.00%
发文量
0
审稿时长
18 weeks
期刊介绍: The purpose of Life Sciences, Society and Policy (LSSP) is to analyse social, ethical and legal dimensions of the most dynamic branches of life sciences and technologies, and to discuss ways to foster responsible innovation, sustainable development and user-driven social policies. LSSP provides an academic forum for engaged scholarship at the intersection of life sciences, philosophy, bioethics, science studies and policy research, and covers a broad area of inquiry both in emerging research areas such as genomics, bioinformatics, biophysics, molecular engineering, nanotechnology and synthetic biology, and in more applied fields such as translational medicine, food science, environmental science, climate studies, research on animals, sustainability, science education and others. The goal is to produce insights, tools and recommendations that are relevant not only for academic researchers and teachers, but also for civil society, policy makers and industry, as well as for professionals in education, health care and the media, thus contributing to better research practices, better policies, and a more sustainable global society.
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