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Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...) |
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Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) |
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Many states make use of personal identity numbers to govern people living in their territory and jurisdiction, but only a few rely on an all-purpose PIN used throughout the public and private sectors. This article examines the all-purpose PIN in Finland as a political technology that brings people to the sphere of public welfare services and subjects them to governance by public authorities and expert institutions. Drawing on documentary materials and interviews, it unpacks the history and uses of the PIN (...) |
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Throughout the Global North, policymakers invest in large-scale integration of health-data infrastructures to facilitate the reuse of clinical data for administration, research, and innovation. Debates about the ethical implications of data repurposing have focused extensively on issues of patient autonomy and privacy. We suggest that it is time to scrutinize also how the everyday work of healthcare staff is affected by political ambitions of data reuse for an increasing number of purposes, and how different purposes are prioritized. Our analysis builds (...) |
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The sociological study of knowledge infrastructures and classification has traditionally focused on the politics and practices of classifying things or people. However, actors’ work to escape dominant infrastructures and pre-established classification systems has received little attention. In response to this, this article argues that it is crucial to analyze, not only the practices and politics of classification, but also actors’work to escape dominant classification systems. The article has two aims: First, to make a theoretical contribution to the study of classification (...) |
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