ECOS: Espace de convergence des savoirs sur la santé personnalisée
- Alain Kaufmann
Interface Sciences-Société (ISS) Director, University of Lausanne (UNIL)
- Gaia Barazzetti
Principal investigator, ISS, University of Lausanne, & Associated researcher, Institut des humanités en médecine, UNIL-Centre Hospitalier Universitaire Vaudois (CHUV)
- Christine Currat
Executive Director, SBP
- Jacques Fellay
Head of Precision Medicine Unit, CHUV & Faculté des Sciences de la Vie, EPFL
The project compares the vision on personalized health (PH) of the following three groups of actors:
- researchers whose work opens new perspectives in the era of PH;
- primary-care physicians who are confronted to the impact of this research on their daily practice and, more broadly, in the context of public health;
- citizens, as future “users”, whether or not they are patients or participants in genetic research programs.
At first, each group of actors will be approached separately to identify its expectations, needs, and the issues they would like to raise. Then, the three groups will interact to identify the paths of convergence based on their different points of view and vision. Finally, a few-day forum will open the discussion on the various topics that have emerged from the previous stages. These developmental processes will lead to the implementation of interactive tools and propose actions to be carried out by the stakeholders including public, experts, decision makers.
In the big-data era, the conditions for acquiring research consent from patients shall become an evolving process in compliance with ethical, legal, and societal requirements. The move towards a new model of consent for research, through a more interactive, transparent, and dynamic approach, focused on the citizen rather than on the patient, is a prerequisite to foster public trust. This approach promotes a proactive exchange of information between data providers and users. This transparent and continuous exchange of information aims to strengthen the informational and societal value of research implying a shifting paradigm from a passive research subject to an active, interested, and valued citizen.
Properly informed, citizens will be able to make more independent choices, follow research projects in which their biological resources are used, change their preference settings over time, and feel more engaged in the whole consent process.