The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The (...) General Data Protection Regulation upholds a rather flexible regime for scientific research through a number of derogations to otherwise stricter data protection requirements, while providing a very broad interpretation of the notion of “scientific research”. Precisely the breadth of these exemptions combined with the ample scope of this notion could provide unintended leeway to the health data processing activities of Big Tech platforms, which have not been immune from carrying out privacy-infringing and socially disruptive practices in the health domain. We thus discuss further finer-grained demarcations to be traced within the broadly construed notion of scientific research, geared to implementing use-based data governance frameworks that distinguish health research activities that should benefit from a facilitated data protection regime from those that should not. We conclude that a “re-purposing” of big data governance approaches in health research is needed if European nations are to promote research activities within a framework of high safeguards for both individual citizens and society. (shrink)

Enacting an AI system typically requires three iterative phases where AI engineers are in command: selection and preparation of the data, selection and configuration of algorithmic tools, and fine-tuning of the different parameters on the basis of intermediate results. Our main hypothesis is that these phases involve practices with ethical questions. This paper maps these ethical questions and proposes a way to address them in light of a neo-republican understanding of freedom, defined as absence of domination. We thereby identify different (...) types of responsibility held by AI engineers and link them to concrete suggestions on how to improve professional practices. This paper contributes to the literature on AI and ethics by focusing on the work necessary to configure AI systems, thereby offering an input to better practices and an input for societal debates. (shrink)