Abstract
While witnessing the advent of the big data era, the unstoppable propagation of the European Union’s General Data Protection Rule (GDPR) and the launch of the EU–US Privacy Shield will impact the way sensitive data can be accessed, shared, and processed in the near future. This societal evolution will require health-care information systems to make a giant leap toward the cause of empowering the “data subject,” i.e., you, me, us, in building and sharing an acceptable “quantified self.” From the lessons learnt in 20 international studies and the processing of associated medical data, legal and ethical implications are explored. This analysis then concludes in a possible response to the (big) data protection question in terms of fundamental principles and technological paradigms for a fair(er) digital economy.
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Notes
- 1.
According to the European Commission, the GDPR will enable people to better control their personal data while modernizing and unifying rules to create a “digital single market” that will “make Europe fit for the digital age” (see: http://europa.eu/rapid/press-release_IP-15-6321_en.htm, accessed October 3, 2016).
The EU–US Privacy Shield is a framework designed to “protect the fundamental rights of anyone in the EU whose personal data is transferred to the United States.” It also “(brings) legal clarity for businesses relying on transatlantic data transfers” (see: http://europa.eu/rapid/press-release_IP-16-2461_en.htm, accessed October 3, 2016).
- 2.
Digital Imaging and Communications in Medicine (DICOM) is the standard for handling, storing, printing and transmitting medical imaging information.
- 3.
Health-e-Child is a European Commission project “aimed at developing a platform to integrate information from traditional and emerging sources to support personalized and preventative medicine as well as large-scale, data-based biomedical research and training” (see: http://cordis.europa.eu/project/rcn/105287_en.html).
- 4.
In computing, a demilitarized zone is a sub-network that separates an internal local area network (LAN) from other untrusted networks (such as the Internet).
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Manset, D. (2017). Big Data and Privacy Fundamentals: Toward a “Digital Skin”. In: Menvielle, L., Audrain-Pontevia, AF., Menvielle, W. (eds) The Digitization of Healthcare. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-349-95173-4_14
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