Ethical sharing of health data in online platforms - which values should be considered?

Riso B; Tupasela A; Vears DF; Felzmann H; Cockbain J; Loi M; Kongsholm NCH; Zullo S; Rakic V

doi:10.1186/s40504-017-0060-z

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Journal article

Ethical sharing of health data in online platforms - which values should be considered?

Riso B Instituto Universitário de Lisboa (ISCTE-IUL), Edifício ISCTE, Av. das Forças Armadas, 1649-026, Lisboa, Portugal. brigida.riso@gmail.com.
Tupasela A Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
Vears DF Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Felzmann H Centre of Bioethical Research and Analysis, Philosophy, School of Humanities, NUI Galway, Galway, Ireland.
Cockbain J University of Gent, Ghent, Belgium.
Loi M Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland.
Kongsholm NCH Section of Philosophy, University of Copenhagen, Copenhagen, Denmark.
Zullo S Department of Legal Studies, CIRSFID, University of Bologna, Bologna, Italy.
Rakic V Centre for the Study of Bioethics, University of Belgrade, Belgrade, Serbia.

2017-08-22

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Life sciences, society and policy. - 2017

Information and communication technology platforms

English 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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