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A solidarity paradox – welfare state data in global health data economy

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...

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Detalles Bibliográficos
Autores principales: Snell, Karoliina, Tarkkala, Heta, Tupasela, Aaro
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10423432/
https://www.ncbi.nlm.nih.gov/pubmed/34965751
http://dx.doi.org/10.1177/13634593211069320
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author Snell, Karoliina
Tarkkala, Heta
Tupasela, Aaro
author_facet Snell, Karoliina
Tarkkala, Heta
Tupasela, Aaro
author_sort Snell, Karoliina
collection PubMed
description 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 solidarization 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.
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spelling pubmed-104234322023-08-14 A solidarity paradox – welfare state data in global health data economy Snell, Karoliina Tarkkala, Heta Tupasela, Aaro Health (London) Articles 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 solidarization 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. SAGE Publications 2021-12-29 2023-09 /pmc/articles/PMC10423432/ /pubmed/34965751 http://dx.doi.org/10.1177/13634593211069320 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Articles
Snell, Karoliina
Tarkkala, Heta
Tupasela, Aaro
A solidarity paradox – welfare state data in global health data economy
title A solidarity paradox – welfare state data in global health data economy
title_full A solidarity paradox – welfare state data in global health data economy
title_fullStr A solidarity paradox – welfare state data in global health data economy
title_full_unstemmed A solidarity paradox – welfare state data in global health data economy
title_short A solidarity paradox – welfare state data in global health data economy
title_sort solidarity paradox – welfare state data in global health data economy
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10423432/
https://www.ncbi.nlm.nih.gov/pubmed/34965751
http://dx.doi.org/10.1177/13634593211069320
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