The ethical implications of new health technologies and citizen participation

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Recent years have witnessed a wave of innovation in health technologies driven by new medical breakthroughs, novel scientific approaches and the rise of digital health technologies. Pioneering methods of drug development and disease diagnosis, the rise of 'big health data', and new means of providing networked care have led to predictions that European health systems are on the cusp of transformation. While much of the promise held in these technological innovations remains to be fully realised, the rise of new health technologies are accompanied by a profound set of shifts in the way individuals – whether as patients, citizens or consumers – engage with matters of health.

The EGE finds that new participatory practices in health are being driven by the confluence of new technologies and social changes in the 21st century. In effect, these practices draw on novel techniques in medical science, reliant on amassing large quantities of volunteer data, which are paving the way for new models of participatory and collaboration-based research. They also stem from the growth of the internet, and mobile devices which are driving new forms of digital networking in health. These trends are by no means confined to the health domain, but form part of wider societal shifts relating to the democratisation of knowledge, the growth of an increasingly informed public, and a greater role claimed by lay citizens in the production of knowledge and innovation.

The EGE recommends:

Changing the way we think about health and about citizen involvement.
Addressing gaps in the governance of citizen involvement and new health technologies.