在线平台上健康数据的道德共享——应考虑哪些价值观?

IF 3.1 Q1 Arts and Humanities
Brígida Riso, Aaro Tupasela, Danya F Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C H Kongsholm, Silvia Zullo, Vojin Rakic
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引用次数: 1

摘要

集约化、广泛化的数据生产和数据存储是当代西方社会的特征。随着致力于收集个人健康和基因组数据的信息和通信技术(ICT)平台的增长,卫生数据共享正在增加。然而,即使是出于科学研究目的,在披露和共享数据时,健康数据的敏感性和个人性质也构成了伦理挑战。考虑到这一点,成本行动CHIP ME“通过公私倡议实现公民健康:公共卫生、市场和伦理观点”(IS 1303)的科学和价值观工作组确定了他们认为对利用信息通信技术平台合乎伦理地共享卫生数据至关重要的六个核心价值观。我们相信,使用这一伦理框架将促进尊重科学实践,以保持个人对研究的信任。我们利用这些价值来分析五个ICT平台,并从多个角度探讨新兴数据共享平台如何重新配置数据共享体验。我们将讨论他们所具有的价值观、权利和责任类型,并在他们的哲学或观点中体现分享个人健康信息的意义。通过这次讨论,我们讨论了个人健康数据和面向患者的基础设施的设计和开发过程的问题,以及技术介导的赋权的新形式。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Ethical sharing of health data in online platforms - which values should be considered?

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME 'Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives' (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals' trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

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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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