To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders (...) acquire a common substantive orientation. (shrink)

Claims that science should be more democratic than it is frequently arouse opposition. In this essay, I distinguish my own views about the democratization of science from the more ambitious theses defended by Paul Feyerabend. I argue that it is unlikely that the complexity of some scientific debates will allow for resolution according to the methodological principles of any formal confirmation theory, suggesting instead that major revolutions rest on conflicts of values. Yet these conflicts should not be dismissed as irresoluble.

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: the positive obligations imposed by the right on the state and other agents to recognize and promote citizen science, the convective nature of the participation in science facilitated by the right and the potential to mobilize the right in rolling back the unprecedented expansion of intellectual property regimes. (shrink)