Article ID: CBB709306750

Impossible, unknowable, accountable: Dramas and dilemmas of data law (August 2019)

unapi

Cool, Alison (Author)


Social Studies of Science
Volume: 49
Issue: 4
Pages: 503-530


Publication Date: August 2019
Edition Details: Special Issue: From Person to Population and Back: Exploring Accountability in Public Health
Language: English

On May 25, 2018, the European Union’s General Data Protection Regulation (GDPR) came into force. EU citizens are granted more control over personal data while companies and organizations are charged with increased responsibility enshrined in broad principles like transparency and accountability. Given the scope of the regulation, which aims to harmonize data practices across 28 member states with different concerns about data collection, the GDPR has significant consequences for individuals in the EU and globally. While the GDPR is primarily intended to regulate tech companies, it also has important implications for data use in scientific research. Drawing on ethnographic fieldwork with researchers, lawyers and legal scholars in Sweden, I argue that the GDPR’s flexible accountability principle effectively encourages researchers to reflect on their ethical responsibility but can also become a source of anxiety and produce unexpected results. Many researchers I spoke with expressed profound uncertainty about ‘impossible’ legal requirements for research data use. Despite the availability of legal texts and interpretations, I suggest we should take researchers’ concerns about ‘unknowable’ data law seriously. Many researchers’ sense of legal ambiguity led them to rethink their data practices and themselves as ethical subjects through an orientation to what they imagined as the ‘real people behind the data’, variously formulated as a Swedish population desiring data use for social benefit or a transnational public eager for research results. The intentions attributed to people, populations and publics – whom researchers only encountered in the abstract form of data – lent ethical weight to various and sometimes conflicting decisions about data security and sharing. Ultimately, researchers’ anxieties about their inability to discern the desires of the ‘real people’ lent new appeal to solutions, however flawed, that promised to alleviate the ethical burden of personal data.

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Associated with

Article Klaus Hoeyer; Susanne Bauer; Martyn Pickersgill (August 2019) Datafication and accountability in public health: Introduction to a special issue. Social Studies of Science (pp. 459-475). unapi

Citation URI
https://data.isiscb.org/isis/citation/CBB709306750/

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Authors & Contributors
Rommetveit, Kjetil
Niels Van Dijk
Roumbanis, Lambros
Karel Martens
Brian Jordan Jefferson
Ziewitz, Malte
Journals
Social Studies of Science
Science, Technology, and Human Values
IEEE Technology and Society Magazine
The Bridge: Journal of the National Academy of Engineering
Tapuya: Latin American Science, Technology and Society
Science as Culture
Publishers
Routledge/Taylor & Francis Group
Springer VS
University of Minnesota Press
New York University Press
Carocci
Cambridge University Press
Concepts
Science and technology studies (STS)
Computers and civilization
Regulation
Big data
Surveillance
Technology and State
Time Periods
21st century
20th century
Modern
Places
European Union
Europe
United States
Sweden
Great Britain
Netherlands
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