Just data? Solidarity and justice in data-driven medicine

AbstractThis paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between thegood and theright, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of thegood. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could —especially considering current developments in big data and artificial intelligence—compromise theright by leading to injustices and affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: thecontrollability of information flows, including  technical infrastructures that are conducive towards controllability, and a paradigm shift towardsoutput-orientation in governance and policy.

Source: Life Sciences, Society and Policy - August 24, 2020 Category: Medical Ethics Source Type: research