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.

中文翻译：

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在在线平台上道德地共享健康数据——应该考虑哪些价值观？

集约化、粗放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) 平台的发展，健康数据共享也在不断增加。然而，即使是出于科学研究目的，当数据被披露和共享时，健康数据的敏感性和个人性也会带来伦理挑战。考虑到这一点，成本行动 CHIP ME 的科学与价值观工作组“通过公私合作保障公民健康”倡议：公共卫生、市场和道德视角（IS 1303）确定了他们认为对于使用 ICT 平台道德共享健康数据至关重要的六个核心价值观。我们相信，使用这一道德框架将促进尊重的科学实践，以维持个人对研究的信任。我们利用这些价值观来分析五个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。我们讨论他们在分享个人健康信息意味着什么的理念或观点中包含和体现哪些类型的价值观、权利和责任。通过这次讨论，我们解决了个人健康数据和以患者为导向的基础设施的设计和开发过程的问题，以及以技术为媒介的赋权的新形式。