Ethical sharing of health data in online platforms - which values should be considered?
Brígida Riso, Aaro Tupasela, Danya F Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana CH Kongsholm, Silvia Zullo, Vojin Rakic
Life Sciences, Society and Policy | Published : 2017
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 f..View full abstract