This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. 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 the right 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: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy.

本文认为，数据驱动的医学带来了特殊的规范挑战。在善与恶之分的背景下，利用个人健康数据来发展和完善数据驱动的医学，从善的角度来看是值得欢迎的。团结一致推动研究和临床实践的进步。与此同时，这种分享行为可能会导致不公正并影响个人自决的具体模式，从而损害权利，特别是考虑到大数据和人工智能的当前发展。为了解决这种潜在的紧张局势，提出了对数据驱动医学进行伦理反思的两个关键要素：信息流的可控性，包括有利于可控性的技术基础设施，以及治理和政策中向产出导向的范式转变。