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http://hdl.handle.net/10071/14284
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Title: Ethical sharing of health data in online platforms – which values should be considered?
Authors: Riso, B.
Tupasela, A.
Vears, D. F.
Felzmann, H.
Cockbain, J.
Loi, M.
Kongsholm, N. C. H.
Zullo, S.
Rakic, V.
Keywords: Data sharing
Ethical values
Health data
Health research
Information and communication technology platforms
Interoperability
Issue Date: 2017
Publisher: SpringerOpen
Abstract: 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.
Peer reviewed: yes
URI: http://hdl.handle.net/10071/14284
DOI: 10.1186/s40504-017-0060-z
ISSN: 2195-7819
Ciência-IUL: https://ciencia.iscte-iul.pt/id/ci-pub-38552
Appears in Collections:CIES-RI - Artigos em revista científica internacional com arbitragem científica

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