Literature DB >> 31057059

Impossible, unknowable, accountable: Dramas and dilemmas of data law.

Alison Cool1.   

Abstract

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.

Entities:  

Keywords:  GDPR; Sweden; accountability; big data; data law; ethics

Mesh:

Year:  2019        PMID: 31057059     DOI: 10.1177/0306312719846557

Source DB:  PubMed          Journal:  Soc Stud Sci        ISSN: 0306-3127            Impact factor:   3.885


  3 in total

1.  Datafication and accountability in public health: Introduction to a special issue.

Authors:  Klaus Hoeyer; Susanne Bauer; Martyn Pickersgill
Journal:  Soc Stud Sci       Date:  2019-08       Impact factor: 3.885

2.  LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

Authors:  Bettina Sandgathe Husebo; Heather Allore; Wilco Achterberg; Renira Corinne Angeles; Clive Ballard; Frøydis Kristine Bruvik; Stein Erik Fæø; Marie Hidle Gedde; Eirin Hillestad; Frode Fadnes Jacobsen; Øyvind Kirkevold; Egil Kjerstad; Reidun Lisbeth Skeide Kjome; Janne Mannseth; Mala Naik; Rui Nouchi; Nathalie Puaschitz; Rune Samdal; Oscar Tranvåg; Charalampos Tzoulis; Ipsit Vihang Vahia; Maarja Vislapuu; Line Iden Berge
Journal:  Trials       Date:  2020-06-09       Impact factor: 2.279

3.  Weak Data: The Social Biography of a Measurement Instrument and How It Failed to Ensure Accountability in Home Care.

Authors:  Klaus Hoeyer; Malene Bødker
Journal:  Med Anthropol Q       Date:  2020-08-05
  3 in total

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