Artigo em revista científica Q1
Ethical sharing of health data in online platforms – which values should be considered?
Brígida Riso (Riso, B.); Aaro Tupasela (Tupasela, A.); Danya F. Vears (Vears, D. F.); Heike Felzmann (Felzmann, H.); Julian Cockbain (Cockbain, J.); Michele Loi (Loi, M.); Nana C. H. Kongsholm (Kongsholm, N. C. H.); Silvia Zullo (Zullo, S.); Vojin Rakic (Rakic, V.); et al.
Título Revista
Life Sciences, Society and Policy
Ano
2017
Língua
Inglês
País
Alemanha
Mais Informação
Scopus

N.º de citações: 5

(Última verificação: 2019-03-19 16:44)

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Abstract/Resumo
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.
Agradecimentos/Acknowledgements
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Palavras-chave
Data sharing,Ethical values,Health data,Health research,Information and communication technology platforms,Interoperability
  • Ciências da Terra e do Ambiente - Ciências Naturais
  • Ciências Biológicas - Ciências Naturais
  • Filosofia, Ética e Religião - Humanidades
Registos de financiamentos
Referência de financiamento Entidade Financiadora
SFRH/BD/100779/2014 Fundação para a Ciência e a Tecnologia