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Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens' rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models., Author(s): Alessandro Blasimme [sup.1] , Effy Vayena [sup.1] , Ernst Hafen [sup.2] Author Affiliations: (Aff1) 0000 0001 2156 2780, grid.5801.c, Department of Health Sciences and Technology, ETH Zurich, , Zurich, [...]

The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right-the entitlement it confers on all human beings to participate in the scientific process in all of its aspects. We then explore three of its key implications for the ethical regulation of citizen science: (a) the positive obligations imposed by the right on the state and other agents to recognize and promote citizen science, (b) the convective nature of the participation in science facilitated by the right and (c) the potential to mobilize the right in rolling back the unprecedented expansion of intellectual property regimes., Author(s): Effy Vayena[sup.1] , John Tasioulas[sup.2] Author Affiliations: (1) Institute of Biomedical Ethics, University of Zurich, Pestalozzistrasse 24, 8032, Zurich, Switzerland (2) Yeoh Tiong Lay Centre for Politics, Philosophy, and [...]