University of Helsinki, Finland.
Health (London). 2023 Sep;27(5):664-680. doi: 10.1177/13634593211069320. Epub 2021 Dec 29.
Nordic welfare states have well institutionalised practises of gathering health and social wellbeing data from their citizens. The establishment of population registers coincided with the building of welfare state institutions and a social contract relying on solidarity. During the last decade, the significance of Nordic registers and health data has increased and they have become sources of economic value. Recent policies expect registers, health data and biobanks to attract international investments, making Nordic countries world-leaders in the global health data economy. In this article we question the conditions and boundaries of solidarity in the emerging data-driven health economy. We argue that the logics of welfare state and data-driven health economy create a paradox - the data economy is not possible without the welfare state data regime, but the logic of data-driven health economy contradicts the value bases of the welfare state data regime and therefore the justifications for data gathering and use become questionable. We develop the concept of to describe the process by which individuals are expected to behave in a solidaristic way to support data gathering and related policy processes. We demonstrate the solidarity paradox through a recent legislative and data infrastructure reform in Finland and discuss it in relation to academic literature on solidarity.
北欧福利国家制定了完善的制度，从公民那里收集健康和社会福利数据。人口登记制度的建立恰逢福利国家机构和基于团结的社会契约的建立。在过去的十年中，北欧登记册和健康数据的重要性不断增加，它们已成为经济价值的来源。最近的政策期望登记册、健康数据和生物库吸引国际投资，使北欧国家成为全球健康数据经济的领导者。在本文中，我们质疑新兴数据驱动型健康经济中团结的条件和界限。我们认为，福利国家和数据驱动的健康经济的逻辑存在矛盾——没有福利国家的数据管理制度，数据经济就不可能存在，但数据驱动的健康经济的逻辑与福利国家的数据管理制度的价值基础相悖，因此，数据收集和使用的理由就变得值得怀疑。我们提出了“数据团结”的概念，来描述人们期望以团结的方式支持数据收集和相关政策过程的行为。我们通过芬兰最近的立法和数据基础设施改革展示了团结悖论，并结合团结的学术文献进行了讨论。
