Impossible, unknowable, accountable Dramas and dilemmas of data law

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. Giv...

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Published inSocial studies of science Vol. 49; no. 4; pp. 503 - 530
Main Author Cool, Alison
Format Journal Article
LanguageEnglish
Published London, England Sage Publications, Ltd 01.08.2019
SAGE Publications
Sage Publications Ltd
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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.
AbstractList 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.
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.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.
Author Cool, Alison
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Cites_doi 10.1093/idpl/ipt005
10.1177/0162243916674321
10.1177/2053951718756685
10.1080/09505431.2016.1189894
10.1561/0400000042
10.21552/EDPL/2016/3/10
10.1177/2053951717738104
10.1525/aa.1965.67.6.02a00930
10.1017/CBO9780511819766
10.18352/ijc.247
10.5325/jinfopoli.6.2016.0479
10.7591/9781501722134
10.1080/09505431.2012.705272
10.1016/0277-9390(83)90022-5
10.2307/3052967
10.1057/s41292-016-0004-5
10.1177/0162243912436985
10.1093/acprof:oso/9780199584741.001.0001
10.1177/0270467616668760
10.1016/S0956-5221(02)00027-1
10.1177/03063127030333003
10.7551/mitpress/9905.001.0001
10.1177/0162243915598056
10.1163/15718093-12341429
10.14506/ca32.1.08
10.1016/j.clsr.2016.02.006
10.1177/0306312717699716
10.1111/1469-8676.12099
10.1007/s00439-011-1065-y
10.1016/j.hisfam.2001.10.001
10.1111/amet.12009
10.1093/acprof:oso/9780199689583.003.0011
10.1146/annurev-genom-082410-101454
10.1080/02691728.2012.760663
10.1177/027046768601100102
10.1177/0306312718804875
10.1177/1463499608093815
10.1371/journal.pcbi.1005399
10.1093/ojls/24.3.495
10.1016/j.clsr.2017.05.015
10.3332/ecancer.2017.709
10.1007/s11948-016-9866-y
10.1177/0306312712446364
10.1057/biosoc.2015.20
10.1146/annurev-anthro-102116-041244
10.1038/541437a
10.1177/0162243909340267
10.1093/idpl/ipw006
10.1111/j.1467-9477.1998.tb00012.x
10.1017/S0269889714000039
10.1080/01402380601019647
10.3917/pope.1302.0183
10.1080/09505431.2011.630069
10.1080/09505431.2018.1425385
10.1186/s40504-015-0024-0
10.1057/biosoc.2015.33
10.1017/S0269889714000040
10.1080/1369118X.2012.678878
10.1017/S0020818308080041
10.1080/03468757708578919
10.1080/13501760500270869
10.1086/681534
10.1023/A:1021379613748
10.14318/hau4.1.027
10.1007/978-94-007-1356-7_10
10.1093/idpl/ipx008
10.1177/0020852313477762
10.2307/839295
10.7208/chicago/9780226675183.001.0001
10.4324/9780203449721
10.1007/978-981-10-5038-1_3
10.1177/0306312718804888
10.1111/j.1749-6632.2012.06630.x
10.1093/idpl/ipx023
10.1080/00324728.1959.10405032
10.1177/0306312718801165
10.1080/09505430600890693
10.1080/14636778.2014.951994
10.1016/0361-3682(87)90039-0
10.1007/s11013-011-9215-1
10.1186/1746-5354-6-2-1
10.1016/0198-9715(86)90015-3
10.1177/0306312713509705
10.1016/j.shpsc.2014.08.008
10.1057/biosoc.2016.16
10.1057/biosoc.2015.25
10.1525/pol.2007.30.2.305
10.1002/sim.5841
10.1098/rsta.2016.0122
10.2139/ssrn.3057469
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References Asdal, Gradmann 2014; 27
Cool 2016; 11
Nadim 2016; 25
Leese 2017; 23
Wuermeling 1996; 14
Seaver 2017; 4
Veselý 2013; 79
Chassang 2017; 11
Pálsson, Prainsack 2011; 5
Keane 2014; 4
Mauthner, Parry 2013; 27
Murphy 2013; 40
Ruckenstein, Schüll 2017; 46
Cloatre, Pickersgill 2014; 33
Sköld 2004; 9
Versluis 2007; 30
Kaye 2012; 13
Österdahl 1998; 23
Busby, Martin 2006; 15
Steele 2002; 24
Benezra 2016; 11
Buttarelli 2016; 6
Flaherty 1986; 11
Karlström 1986; 11
Ohm 2009; 57
Levin, Leonelli, Weckowska 2016; 36
Tarkkala, Tupasela 2018; 48
Mitchell, Waldby 2010; 35
Lederman 2007; 30
Fisher 2004; 24
Anderson 1973; 21
Moore 1973; 7
Mackenzie 2003; 33
Hogle 2016; 11
Öman 2010; 56
Carusi 2016; 30
Kuner, Jerker, Svantesson 2017; 7
Lewin 1998; 21
Shaw, Armin 2011; 35
Bauer 2014; 27
Machado, Granja 2018; 27
Rapp 2015; 11
Carusi 2014; 48
Jones 2017; 47
Lundvik 1983; 10
Mattsson 2016; 23
Wagner, Benecke 2016; 2
Gehrke 2012; 1260
Shore, Wright, Amit 2015; 56
Krotoszynski 2014; 56
Bohannan 1965; 67
Arribas-Ayllon 2010; 6
Lassiter, Cadigan, Haldeman 2016; 11
De Hert, Papakonstantinou 2016; 32
Tupasela, Snell, Cañada 2015; 11
Hoeppe 2014; 44
Hoeyer, Tupasela, Rasmussen 2017; 42
Tikkinen-Piri, Rohunen, Markkula 2018; 34
Mastenbroek 2005; 12
boyd, Crawford 2012; 15
Gottweis, Chen, Starkbaum 2011; 130
Leonelli 2016; 374
Shilton 2013; 38
Tempini, Leonelli 2018; 48
Kälvemark 1977; 2
Dwork, Roth 2014; 9
Hedgecoe 2012; 42
Loong, Zaslavsky, He 2013; 32
Banisar, Davies 1999; 18
Cate, Mayer-Schönberger 2013; 3
Pink, Lanzeni, Horst 2018
Bygrave 2010; 56
Miller, O’Leary 1987; 12
Newman 2008; 62
Zook, Barocas, boyd 2017; 13
Harvey, Salter 2012; 21
Poulain, Herm 2013; 68
Seltzer, Anderson 2001; 68
Burri, Schär 2016; 6
Venkat 2017; 32
Reiter 2002; 18
Lindkvist, Llewellyn 2003; 19
Litton 2017; 541
Hutchinson 1959; 13
Shore 2008; 8
Douglas-Jones 2015; 23
Wolters 2017; 7
Hinterberger 2012; 21
Varotto 2015; 20
Burton 2018; 48
Neyland 2016; 41
bibr91-0306312719846557
bibr40-0306312719846557
bibr83-0306312719846557
bibr116-0306312719846557
bibr49-0306312719846557
bibr75-0306312719846557
bibr32-0306312719846557
bibr1-0306312719846557
McDonald M (bibr63-0306312719846557) 2000
bibr30-0306312719846557
bibr114-0306312719846557
bibr14-0306312719846557
bibr57-0306312719846557
bibr73-0306312719846557
Sandell K (bibr92-0306312719846557) 2003
bibr39-0306312719846557
Krotoszynski RJJ (bibr50-0306312719846557) 2014; 56
bibr22-0306312719846557
bibr34-0306312719846557
bibr47-0306312719846557
Martin E (bibr67-0306312719846557) 1994
bibr42-0306312719846557
bibr55-0306312719846557
bibr81-0306312719846557
bibr3-0306312719846557
bibr106-0306312719846557
bibr71-0306312719846557
bibr24-0306312719846557
bibr37-0306312719846557
bibr96-0306312719846557
bibr102-0306312719846557
bibr70-0306312719846557
bibr88-0306312719846557
bibr110-0306312719846557
bibr62-0306312719846557
bibr5-0306312719846557
European Commission (bibr29-0306312719846557) 2016
bibr27-0306312719846557
bibr8-0306312719846557
Flaherty DH (bibr33-0306312719846557) 1992
bibr43-0306312719846557
bibr18-0306312719846557
bibr69-0306312719846557
bibr26-0306312719846557
Mack J (bibr65-0306312719846557) 2017
bibr77-0306312719846557
bibr85-0306312719846557
Rothstein B (bibr90-0306312719846557) 2006
bibr12-0306312719846557
bibr51-0306312719846557
bibr38-0306312719846557
bibr46-0306312719846557
Reiter JP (bibr89-0306312719846557) 2002; 18
bibr54-0306312719846557
European Commission (bibr28-0306312719846557) 2015
bibr2-0306312719846557
bibr93-0306312719846557
bibr15-0306312719846557
bibr74-0306312719846557
bibr58-0306312719846557
bibr115-0306312719846557
bibr23-0306312719846557
bibr66-0306312719846557
Seltzer W (bibr94-0306312719846557) 2001; 68
bibr117-0306312719846557
bibr56-0306312719846557
bibr31-0306312719846557
bibr99-0306312719846557
Wuermeling U (bibr118-0306312719846557) 1996; 14
bibr13-0306312719846557
bibr48-0306312719846557
bibr109-0306312719846557
bibr113-0306312719846557
Ohm P (bibr79-0306312719846557) 2009; 57
bibr9-0306312719846557
Banisar D (bibr6-0306312719846557) 1999; 18
bibr100-0306312719846557
bibr68-0306312719846557
bibr21-0306312719846557
bibr84-0306312719846557
bibr119-0306312719846557
bibr97-0306312719846557
bibr19-0306312719846557
Thomas R (bibr108-0306312719846557) 2014
Bygrave LA (bibr16-0306312719846557) 2010; 56
bibr11-0306312719846557
bibr76-0306312719846557
bibr53-0306312719846557
bibr10-0306312719846557
Carusi A (bibr20-0306312719846557) 2016; 30
Gluckman M (bibr35-0306312719846557) 1973
bibr61-0306312719846557
bibr45-0306312719846557
bibr87-0306312719846557
bibr7-0306312719846557
bibr36-0306312719846557
Sundin J (bibr105-0306312719846557) 2005
bibr78-0306312719846557
bibr60-0306312719846557
bibr101-0306312719846557
bibr44-0306312719846557
bibr86-0306312719846557
Varotto S (bibr111-0306312719846557) 2015; 20
Öman S (bibr80-0306312719846557) 2010; 56
bibr52-0306312719846557
bibr95-0306312719846557
bibr4-0306312719846557
bibr72-0306312719846557
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Österdahl I (bibr82-0306312719846557) 1998; 23
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bibr107-0306312719846557
References_xml – volume: 21
  start-page: 419
  issue: 3
  year: 1973
  end-page: 473
  article-title: Public access to government files in Sweden
  publication-title: The American Journal of Comparative Law
– volume: 40
  start-page: 118
  issue: 1
  year: 2013
  end-page: 131
  article-title: A cultural geometry: Designing political things in Sweden
  publication-title: American Ethnologist
– volume: 8
  start-page: 278
  issue: 3
  year: 2008
  end-page: 298
  article-title: Audit culture and illiberal governance: Universities and the politics of accountability
  publication-title: Anthropological Theory
– volume: 48
  start-page: 762
  issue: 5
  year: 2018
  end-page: 786
  article-title: Narrating ethnicity and diversity in Middle Eastern national genome projects
  publication-title: Social Studies of Science
– volume: 6
  start-page: 77
  issue: 2
  year: 2016
  end-page: 78
  article-title: The EU GDPR as a clarion call for a new global digital gold standard
  publication-title: International Data Privacy Law
– volume: 32
  start-page: 93
  issue: 1
  year: 2017
  end-page: 116
  article-title: Scenes of commitment
  publication-title: Cultural Anthropology
– volume: 12
  start-page: 235
  issue: 3
  year: 1987
  end-page: 265
  article-title: Accounting and the construction of the governable person
  publication-title: Accounting, Organizations and Society
– volume: 68
  start-page: 183
  issue: 2
  year: 2013
  end-page: 212
  article-title: Central population registers as a source of demographic statistics in Europe
  publication-title: Population
– volume: 9
  start-page: 211
  issue: 3–4
  year: 2014
  end-page: 407
  article-title: The algorithmic foundations of differential privacy
  publication-title: Foundations and Trends® in Theoretical Computer Science
– volume: 56
  start-page: 421
  issue: 3
  year: 2015
  end-page: 444
  article-title: Audit culture revisited: Rankings, ratings, and the reassembling of society
  publication-title: Current Anthropology
– volume: 23
  start-page: 53
  issue: 1
  year: 2015
  end-page: 67
  article-title: A ‘good’ ethical review: Audit and professionalism in research ethics
  publication-title: Social Anthropology
– volume: 68
  start-page: 481
  issue: 2
  year: 2001
  end-page: 513
  article-title: The dark side of numbers: The role of population data systems in human rights abuses
  publication-title: Social Research
– volume: 130
  start-page: 433
  issue: 3
  year: 2011
  end-page: 440
  article-title: Biobanks and the phantom public
  publication-title: Human Genetics
– volume: 541
  start-page: 437
  issue: 7638
  year: 2017
  article-title: We must urgently clarify data-sharing rules
  publication-title: Nature News
– volume: 46
  start-page: 261
  issue: 1
  year: 2017
  end-page: 278
  article-title: The datafication of health
  publication-title: Annual Review of Anthropology
– volume: 34
  start-page: 134
  issue: 1
  year: 2018
  end-page: 153
  article-title: EU General Data Protection Regulation: Changes and implications for personal data collecting companies
  publication-title: Computer Law & Security Review
– volume: 35
  start-page: 330
  issue: 3
  year: 2010
  end-page: 355
  article-title: National biobanks: Clinical labor, risk production, and the creation of biovalue
  publication-title: Science, Technology, & Human Values
– volume: 11
  start-page: 67
  issue: 1
  year: 2016
  end-page: 81
  article-title: Standardization as performative accountability in biobanking
  publication-title: BioSocieties
– volume: 27
  start-page: 187
  issue: 2
  year: 2014
  end-page: 213
  article-title: From administrative infrastructure to biomedical resource: Danish population registries, the “Scandinavian laboratory”, and the “epidemiologist’s dream”
  publication-title: Science in Context
– volume: 5
  start-page: 259
  issue: 2
  year: 2011
  end-page: 283
  article-title: Genomic stuff: Governing the (im)matter of life
  publication-title: International Journal of the Commons
– volume: 79
  start-page: 310
  issue: 2
  year: 2013
  end-page: 330
  article-title: Accountability in Central and Eastern Europe: Concept and reality
  publication-title: International Review of Administrative Sciences
– volume: 15
  start-page: 662
  issue: 5
  year: 2012
  end-page: 679
  article-title: Critical questions for big data
  publication-title: Information Communication & Society
– volume: 13
  start-page: e1005399
  issue: 3
  year: 2017
  article-title: Ten simple rules for responsible big data research
  publication-title: PLoS Computational Biology
– volume: 23
  start-page: 336
  year: 1998
  end-page: 356
  article-title: Openness v. secrecy: Public access to documents in Sweden and the European Union
  publication-title: European Law Review
– volume: 374
  start-page: 20160122
  issue: 2083
  year: 2016
  article-title: Locating ethics in data science: Responsibility and accountability in global and distributed knowledge production systems
  publication-title: Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences
– volume: 35
  start-page: 236
  issue: 2
  year: 2011
  end-page: 261
  article-title: The ethical self-fashioning of physicians and health care systems in culturally appropriate health care
  publication-title: Culture, Medicine, and Psychiatry
– volume: 42
  start-page: 662
  issue: 5
  year: 2012
  end-page: 683
  article-title: Trust and regulatory organisations: The role of local knowledge and facework in research ethics review
  publication-title: Social Studies of Science
– volume: 2
  start-page: 211
  issue: 1
  year: 1977
  end-page: 230
  article-title: The country that kept track of its population: Methodological aspects of Swedish population records
  publication-title: Scandinavian Journal of History
– volume: 25
  start-page: 496
  issue: 4
  year: 2016
  end-page: 519
  article-title: Data labours: How the sequence databases GenBank and EMBL-Bank make data
  publication-title: Science as Culture
– volume: 48
  start-page: 28
  year: 2014
  end-page: 37
  article-title: Validation and variability: Dual challenges on the path from systems biology to systems medicine
  publication-title: Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences
– volume: 24
  start-page: 495
  issue: 3
  year: 2004
  end-page: 515
  article-title: The European Union in the age of accountability
  publication-title: Oxford Journal of Legal Studies
– volume: 67
  start-page: 33
  issue: 6
  year: 1965
  end-page: 42
  article-title: The differing realms of the law
  publication-title: American Anthropologist
– volume: 18
  start-page: 1
  year: 1999
  end-page: 112
  article-title: Global trends in privacy protection: An international survey of privacy, data protection, and surveillance laws and developments
  publication-title: John Marshall Journal of Computer and Information Law
– volume: 12
  start-page: 1103
  issue: 6
  year: 2005
  end-page: 1120
  article-title: EU compliance: Still a ‘black hole’?
  publication-title: Journal of European Public Policy
– volume: 11
  start-page: 334
  issue: 3
  year: 2016
  end-page: 351
  article-title: Datafying microbes: Malnutrition at the intersection of genomics and global health
  publication-title: BioSocieties
– volume: 42
  start-page: 381
  issue: 3
  year: 2017
  end-page: 404
  article-title: Ethics policies and ethics work in cross-national genetic research and data sharing: Flows, nonflows, and overflows
  publication-title: Science, Technology, & Human Values
– volume: 4
  issue: 2
  year: 2017
  article-title: Algorithms as culture: Some tactics for the ethnography of algorithmic systems
  publication-title: Big Data & Society
– volume: 32
  start-page: 179
  issue: 2
  year: 2016
  end-page: 194
  article-title: The new General Data Protection Regulation: Still a sound system for the protection of individuals?
  publication-title: Computer Law & Security Review
– volume: 10
  start-page: 3
  issue: 1
  year: 1983
  end-page: 9
  article-title: The public’s access to official documents in Sweden: The rules and their consequences
  publication-title: Government Publications Review
– volume: 11
  start-page: 107
  issue: 3
  year: 1986
  end-page: 113
  article-title: Information systems in local governments in Sweden
  publication-title: Computers, Environment and Urban Systems
– volume: 6
  start-page: 479
  year: 2016
  end-page: 511
  article-title: The reform of the EU data protection framework: Outlining key changes and assessing their fitness for a data-driven economy
  publication-title: Journal of Information Policy
– volume: 33
  start-page: 365
  issue: 3
  year: 2003
  end-page: 387
  article-title: These things called systems: Collective imaginings and infrastructural software
  publication-title: Social Studies of Science
– volume: 30
  start-page: 305
  issue: 2
  year: 2007
  end-page: 327
  article-title: Comparative “research”: A modest proposal concerning the object of ethics regulation
  publication-title: Polar: Political and Legal Anthropology Review
– volume: 27
  start-page: 47
  issue: 1
  year: 2013
  end-page: 67
  article-title: Open access digital data sharing: Principles, policies and practices
  publication-title: Social Epistemology
– volume: 11
  start-page: 5
  issue: 1
  year: 2015
  article-title: Constructing populations in biobanking
  publication-title: Life Sciences, Society and Policy
– volume: 21
  start-page: 528
  issue: 4
  year: 2012
  end-page: 549
  article-title: Publics and populations: The politics of ancestry and exchange in genome science
  publication-title: Science as Culture
– volume: 30
  start-page: 67
  year: 2016
  end-page: 86
  article-title: In silico medicine: Social, technological and symbolic mediation
  publication-title: Humana-Mente Journal of Philosophical Studies
– volume: 41
  start-page: 50
  issue: 1
  year: 2016
  end-page: 76
  article-title: Bearing account-able witness to the ethical algorithmic system
  publication-title: Science, Technology & Human Values
– volume: 11
  start-page: 296
  issue: 3
  year: 2015
  end-page: 316
  article-title: Big data, small kids: Medico-scientific, familial and advocacy visions of human brains
  publication-title: BioSocieties
– volume: 11
  start-page: 709
  year: 2017
  article-title: The impact of the EU General Data Protection Regulation on scientific research
  publication-title: ecancermedicalscience
– volume: 7
  start-page: 231
  issue: 4
  year: 2017
  end-page: 232
  article-title: The GDPR as a chance to break down borders
  publication-title: International Data Privacy Law
– year: 2018
  article-title: Data anxieties: Finding trust in everyday digital mess
  publication-title: Big Data & Society
– volume: 56
  start-page: 165
  year: 2010
  end-page: 200
  article-title: Privacy and data protection in an international perspective
  publication-title: Scandinavian Studies in Law
– volume: 15
  start-page: 237
  issue: 3
  year: 2006
  end-page: 251
  article-title: Biobanks, national identity and imagined communities: The case of UK biobank
  publication-title: Science as Culture
– volume: 7
  start-page: 165
  issue: 3
  year: 2017
  end-page: 178
  article-title: The security of personal data under the GDPR: A harmonized duty or a shared responsibility?
  publication-title: International Data Privacy Law
– volume: 13
  start-page: 415
  year: 2012
  end-page: 431
  article-title: The tension between data sharing and the protection of privacy in genomics research
  publication-title: Annual Review of Genomics and Human Genetics
– volume: 19
  start-page: 251
  issue: 2
  year: 2003
  end-page: 273
  article-title: Accountability, responsibility and organization
  publication-title: Scandinavian Journal of Management
– volume: 20
  start-page: 78
  issue: 3
  year: 2015
  end-page: 85
  article-title: The European General Data Protection Regulation and its potential impact on businesses: Some critical notes on the strengthened regime of accountability and the new sanctions
  publication-title: Communications Law
– volume: 4
  start-page: 443
  issue: 1
  year: 2014
  end-page: 457
  article-title: Freedom, reflexivity, and the sheer everydayness of ethics
  publication-title: HAU: Journal of Ethnographic Theory
– volume: 11
  start-page: 7
  issue: 1
  year: 1986
  end-page: 18
  article-title: Governmental surveillance and bureaucratic accountability: Data protection agencies in Western societies
  publication-title: Science, Technology, & Human Values
– volume: 32
  start-page: 4139
  issue: 24
  year: 2013
  end-page: 4161
  article-title: Disclosure control using partially synthetic data for large-scale health surveys, with applications to CanCORS
  publication-title: Statistics in Medicine
– volume: 18
  start-page: 531
  issue: 4
  year: 2002
  article-title: Satisfying disclosure restrictions with synthetic data sets
  publication-title: Journal of Official Statistics
– volume: 3
  start-page: 67
  issue: 2
  year: 2013
  end-page: 73
  article-title: Notice and consent in a world of big data
  publication-title: International Data Privacy Law
– volume: 11
  start-page: 372
  issue: 3
  year: 2016
  end-page: 393
  article-title: Data-intensive resourcing in healthcare
  publication-title: BioSocieties
– volume: 27
  start-page: 177
  issue: 2
  year: 2014
  end-page: 186
  article-title: Introduction: Science, technology, medicine – And the state: The science-state nexus in Scandinavia, 1850–1980
  publication-title: Science in Context
– volume: 7
  start-page: 719
  issue: 4
  year: 1973
  end-page: 746
  article-title: Law and social change: The semi-autonomous social field as an appropriate subject of study
  publication-title: Law & Society Review
– volume: 1260
  start-page: 45
  issue: 1
  year: 2012
  end-page: 54
  article-title: Quo vadis, data privacy?
  publication-title: Annals of the New York Academy of Sciences
– volume: 9
  start-page: 5
  issue: 1
  year: 2004
  end-page: 21
  article-title: The birth of population statistics in Sweden
  publication-title: The History of the Family
– volume: 56
  year: 2010
  article-title: Trends in data protection law
  publication-title: Scandinavian Studies in Law
– volume: 56
  start-page: 1279
  year: 2014
  article-title: Reconciling privacy and speech in the era of big data: A comparative legal analysis
  publication-title: William & Mary Law Review
– volume: 48
  start-page: 740
  issue: 5
  year: 2018
  end-page: 761
  article-title: Shortcut to success? Negotiating genetic uniqueness in global biomedicine
  publication-title: Social Studies of Science
– volume: 23
  start-page: 1597
  issue: 6
  year: 2017
  end-page: 1616
  article-title: Holding the project accountable: Research governance, ethics, and democracy
  publication-title: Science and Engineering Ethics
– volume: 44
  start-page: 243
  issue: 2
  year: 2014
  end-page: 270
  article-title: Working data together: The accountability and reflexivity of digital astronomical practice
  publication-title: Social Studies of Science
– volume: 62
  start-page: 103
  issue: 1
  year: 2008
  end-page: 130
  article-title: Building transnational civil liberties: Transgovernmental entrepreneurs and the European Data Privacy Directive
  publication-title: International Organization
– volume: 14
  start-page: 411
  issue: 3
  year: 1996
  end-page: 460
  article-title: Harmonisation of European Union Privacy Law
  publication-title: The John Marshall Journal of Information Technology & Privacy Law
– volume: 21
  start-page: 195
  issue: 3
  year: 1998
  end-page: 206
  article-title: Majoritarian and consensus democracy: The Swedish experience
  publication-title: Scandinavian Political Studies
– volume: 38
  start-page: 374
  issue: 3
  year: 2013
  end-page: 397
  article-title: Values levers: Building ethics into design
  publication-title: Science, Technology, & Human Values
– volume: 47
  start-page: 216
  issue: 2
  year: 2017
  end-page: 239
  article-title: The right to a human in the loop: Political constructions of computer automation and personhood
  publication-title: Social Studies of Science
– volume: 21
  start-page: 291
  issue: 3
  year: 2012
  end-page: 313
  article-title: Anticipatory governance: Bioethical expertise for human/animal chimeras
  publication-title: Science as Culture
– volume: 6
  start-page: 1
  issue: 2
  year: 2010
  end-page: 12
  article-title: Beyond pessimism: The dialectic of promise and complexity in genomic research
  publication-title: Genomics, Society and Policy
– volume: 2
  start-page: 353
  year: 2016
  end-page: 361
  article-title: National legislation within the framework of the GDPR
  publication-title: European Data Protection Law Review
– volume: 36
  start-page: 128
  issue: 2
  year: 2016
  end-page: 141
  article-title: How do scientists define openness? Exploring the relationship between open science policies and research practice
  publication-title: Bulletin of Science, Technology & Society
– volume: 24
  start-page: 19
  year: 2002
  end-page: 39
  article-title: Data protection: An opening door? The relationship between accessibility and privacy in Sweden in an EU perspective
  publication-title: Liverpool Law Review
– volume: 57
  start-page: 1701
  year: 2009
  end-page: 1778
  article-title: Broken promises of privacy: Responding to the surprising failure of anonymization
  publication-title: UCLA Law Review
– volume: 23
  start-page: 453
  issue: 5
  year: 2016
  end-page: 469
  article-title: Quality registries in Sweden, healthcare improvements and elderly persons with cognitive impairments
  publication-title: European Journal of Health Law
– volume: 11
  issue: 3
  year: 2016
  article-title: Detaching data from the state: Biobanking and building big data in Sweden
  publication-title: BioSocieties
– volume: 13
  start-page: 81
  issue: 1
  year: 1959
  end-page: 102
  article-title: Swedish population thought in the Eighteenth Century
  publication-title: Population Studies
– volume: 27
  start-page: 242
  issue: 2
  year: 2018
  end-page: 264
  article-title: Ethics in transnational forensic DNA data exchange in the EU: Constructing boundaries and managing controversies
  publication-title: Science as Culture
– volume: 48
  start-page: 663
  issue: 4
  year: 2018
  end-page: 690
  article-title: Concealment and discovery: The role of information security in biomedical data re-use
  publication-title: Social Studies of Science
– volume: 30
  start-page: 50
  issue: 1
  year: 2007
  end-page: 67
  article-title: Even rules, uneven practices: Opening the ‘black box’ of EU law in action
  publication-title: West European Politics
– volume: 33
  start-page: 434
  issue: 4
  year: 2014
  end-page: 449
  article-title: International law, public health, and the meanings of pharmaceuticalization
  publication-title: New Genetics and Society
– ident: bibr21-0306312719846557
  doi: 10.1093/idpl/ipt005
– ident: bibr42-0306312719846557
  doi: 10.1177/0162243916674321
– ident: bibr84-0306312719846557
  doi: 10.1177/2053951718756685
– ident: bibr76-0306312719846557
  doi: 10.1080/09505431.2016.1189894
– volume: 56
  year: 2010
  ident: bibr80-0306312719846557
  publication-title: Scandinavian Studies in Law
– ident: bibr27-0306312719846557
  doi: 10.1561/0400000042
– volume: 14
  start-page: 411
  issue: 3
  year: 1996
  ident: bibr118-0306312719846557
  publication-title: The John Marshall Journal of Information Technology & Privacy Law
– ident: bibr115-0306312719846557
  doi: 10.21552/EDPL/2016/3/10
– volume: 68
  start-page: 481
  issue: 2
  year: 2001
  ident: bibr94-0306312719846557
  publication-title: Social Research
– ident: bibr93-0306312719846557
  doi: 10.1177/2053951717738104
– ident: bibr10-0306312719846557
  doi: 10.1525/aa.1965.67.6.02a00930
– start-page: 49
  volume-title: Commons: Old and New
  year: 2003
  ident: bibr92-0306312719846557
– volume-title: The Judicial Process among the Barotse of Northern Rhodesia
  year: 1973
  ident: bibr35-0306312719846557
– ident: bibr37-0306312719846557
  doi: 10.1017/CBO9780511819766
– ident: bibr83-0306312719846557
  doi: 10.18352/ijc.247
– ident: bibr101-0306312719846557
– ident: bibr12-0306312719846557
  doi: 10.5325/jinfopoli.6.2016.0479
– ident: bibr9-0306312719846557
  doi: 10.7591/9781501722134
– ident: bibr40-0306312719846557
  doi: 10.1080/09505431.2012.705272
– ident: bibr62-0306312719846557
  doi: 10.1016/0277-9390(83)90022-5
– ident: bibr74-0306312719846557
  doi: 10.2307/3052967
– volume-title: Protecting Privacy in Surveillance Societies: The Federal Republic of Germany, Sweden, France, Canada, and the United States
  year: 1992
  ident: bibr33-0306312719846557
– ident: bibr43-0306312719846557
  doi: 10.1057/s41292-016-0004-5
– ident: bibr96-0306312719846557
  doi: 10.1177/0162243912436985
– ident: bibr117-0306312719846557
  doi: 10.1093/acprof:oso/9780199584741.001.0001
– ident: bibr57-0306312719846557
  doi: 10.1177/0270467616668760
– ident: bibr59-0306312719846557
  doi: 10.1016/S0956-5221(02)00027-1
– ident: bibr66-0306312719846557
  doi: 10.1177/03063127030333003
– volume: 56
  start-page: 165
  year: 2010
  ident: bibr16-0306312719846557
  publication-title: Scandinavian Studies in Law
– ident: bibr5-0306312719846557
  doi: 10.7551/mitpress/9905.001.0001
– ident: bibr78-0306312719846557
  doi: 10.1177/0162243915598056
– volume: 18
  start-page: 1
  year: 1999
  ident: bibr6-0306312719846557
  publication-title: John Marshall Journal of Computer and Information Law
– ident: bibr69-0306312719846557
  doi: 10.1163/15718093-12341429
– volume: 23
  start-page: 336
  year: 1998
  ident: bibr82-0306312719846557
  publication-title: European Law Review
– ident: bibr112-0306312719846557
  doi: 10.14506/ca32.1.08
– ident: bibr25-0306312719846557
  doi: 10.1016/j.clsr.2016.02.006
– ident: bibr45-0306312719846557
  doi: 10.1177/0306312717699716
– ident: bibr26-0306312719846557
  doi: 10.1111/1469-8676.12099
– ident: bibr36-0306312719846557
  doi: 10.1007/s00439-011-1065-y
– ident: bibr100-0306312719846557
  doi: 10.1016/j.hisfam.2001.10.001
– ident: bibr75-0306312719846557
  doi: 10.1111/amet.12009
– start-page: 106
  volume-title: Audit Cultures: Anthropological Studies in Accountability, Ethics and the Academy
  year: 2000
  ident: bibr63-0306312719846557
– ident: bibr54-0306312719846557
  doi: 10.1093/acprof:oso/9780199689583.003.0011
– start-page: 135
  volume-title: Data Protection Anno 2014: How to Restore Trust? Contributions in Honour of Peter Hustinx, European Data Protection Supervisor (2004-2014)
  year: 2014
  ident: bibr108-0306312719846557
– ident: bibr48-0306312719846557
  doi: 10.1146/annurev-genom-082410-101454
– volume: 30
  start-page: 67
  year: 2016
  ident: bibr20-0306312719846557
  publication-title: Humana-Mente Journal of Philosophical Studies
– volume: 56
  start-page: 1279
  year: 2014
  ident: bibr50-0306312719846557
  publication-title: William & Mary Law Review
– ident: bibr70-0306312719846557
  doi: 10.1080/02691728.2012.760663
– ident: bibr32-0306312719846557
  doi: 10.1177/027046768601100102
– ident: bibr107-0306312719846557
  doi: 10.1177/0306312718804875
– volume-title: Flexible Bodies: Tracking Immunity in American Culture from the Days of Polio to the Age of AIDS
  year: 1994
  ident: bibr67-0306312719846557
– ident: bibr97-0306312719846557
  doi: 10.1177/1463499608093815
– ident: bibr30-0306312719846557
– ident: bibr119-0306312719846557
  doi: 10.1371/journal.pcbi.1005399
– ident: bibr31-0306312719846557
  doi: 10.1093/ojls/24.3.495
– volume: 20
  start-page: 78
  issue: 3
  year: 2015
  ident: bibr111-0306312719846557
  publication-title: Communications Law
– ident: bibr109-0306312719846557
  doi: 10.1016/j.clsr.2017.05.015
– ident: bibr22-0306312719846557
  doi: 10.3332/ecancer.2017.709
– ident: bibr55-0306312719846557
  doi: 10.1007/s11948-016-9866-y
– ident: bibr39-0306312719846557
  doi: 10.1177/0306312712446364
– ident: bibr52-0306312719846557
  doi: 10.1057/biosoc.2015.20
– ident: bibr91-0306312719846557
  doi: 10.1146/annurev-anthro-102116-041244
– ident: bibr81-0306312719846557
– ident: bibr60-0306312719846557
  doi: 10.1038/541437a
– ident: bibr73-0306312719846557
  doi: 10.1177/0162243909340267
– ident: bibr15-0306312719846557
  doi: 10.1093/idpl/ipw006
– volume: 57
  start-page: 1701
  year: 2009
  ident: bibr79-0306312719846557
  publication-title: UCLA Law Review
– ident: bibr58-0306312719846557
  doi: 10.1111/j.1467-9477.1998.tb00012.x
– ident: bibr71-0306312719846557
– ident: bibr4-0306312719846557
  doi: 10.1017/S0269889714000039
– ident: bibr113-0306312719846557
  doi: 10.1080/01402380601019647
– ident: bibr86-0306312719846557
  doi: 10.3917/pope.1302.0183
– ident: bibr38-0306312719846557
  doi: 10.1080/09505431.2011.630069
– ident: bibr64-0306312719846557
  doi: 10.1080/09505431.2018.1425385
– ident: bibr110-0306312719846557
  doi: 10.1186/s40504-015-0024-0
– ident: bibr88-0306312719846557
  doi: 10.1057/biosoc.2015.33
– ident: bibr7-0306312719846557
  doi: 10.1017/S0269889714000040
– ident: bibr11-0306312719846557
  doi: 10.1080/1369118X.2012.678878
– ident: bibr77-0306312719846557
  doi: 10.1017/S0020818308080041
– volume-title: Vad bör Staten Göra? Om Välfärdsstatens Moraliska och Politiska Logik
  year: 2006
  ident: bibr90-0306312719846557
– ident: bibr46-0306312719846557
  doi: 10.1080/03468757708578919
– ident: bibr68-0306312719846557
  doi: 10.1080/13501760500270869
– ident: bibr98-0306312719846557
  doi: 10.1086/681534
– ident: bibr102-0306312719846557
  doi: 10.1023/A:1021379613748
– ident: bibr49-0306312719846557
  doi: 10.14318/hau4.1.027
– volume-title: Access to and Preservation of Scientific Information in Europe
  year: 2015
  ident: bibr28-0306312719846557
– ident: bibr3-0306312719846557
– ident: bibr18-0306312719846557
  doi: 10.1007/978-94-007-1356-7_10
– start-page: 279
  volume-title: Audit Cultures: Anthropological Studies in Accountability, Ethics, and the Academy
  year: 2000
  ident: bibr103-0306312719846557
– ident: bibr17-0306312719846557
– ident: bibr116-0306312719846557
  doi: 10.1093/idpl/ipx008
– ident: bibr114-0306312719846557
  doi: 10.1177/0020852313477762
– volume-title: Svenska Folkets Hälsa i Historiskt Perspektiv
  year: 2005
  ident: bibr105-0306312719846557
– ident: bibr1-0306312719846557
  doi: 10.2307/839295
– ident: bibr85-0306312719846557
  doi: 10.7208/chicago/9780226675183.001.0001
– ident: bibr104-0306312719846557
  doi: 10.4324/9780203449721
– ident: bibr99-0306312719846557
  doi: 10.1007/978-981-10-5038-1_3
– ident: bibr13-0306312719846557
  doi: 10.1177/0306312718804888
– ident: bibr34-0306312719846557
  doi: 10.1111/j.1749-6632.2012.06630.x
– ident: bibr51-0306312719846557
  doi: 10.1093/idpl/ipx023
– ident: bibr44-0306312719846557
  doi: 10.1080/00324728.1959.10405032
– ident: bibr106-0306312719846557
  doi: 10.1177/0306312718801165
– ident: bibr14-0306312719846557
  doi: 10.1080/09505430600890693
– ident: bibr23-0306312719846557
  doi: 10.1080/14636778.2014.951994
– ident: bibr72-0306312719846557
  doi: 10.1016/0361-3682(87)90039-0
– ident: bibr95-0306312719846557
  doi: 10.1007/s11013-011-9215-1
– volume: 18
  start-page: 531
  issue: 4
  year: 2002
  ident: bibr89-0306312719846557
  publication-title: Journal of Official Statistics
– volume-title: Open Innovation, Open Science, Open to the World – A Vision for Europe
  year: 2016
  ident: bibr29-0306312719846557
– ident: bibr2-0306312719846557
  doi: 10.1186/1746-5354-6-2-1
– ident: bibr47-0306312719846557
  doi: 10.1016/0198-9715(86)90015-3
– ident: bibr41-0306312719846557
  doi: 10.1177/0306312713509705
– volume-title: The Construction of Equality: Syriac Immigration and the Swedish City
  year: 2017
  ident: bibr65-0306312719846557
– ident: bibr19-0306312719846557
  doi: 10.1016/j.shpsc.2014.08.008
– ident: bibr8-0306312719846557
  doi: 10.1057/biosoc.2016.16
– ident: bibr24-0306312719846557
  doi: 10.1057/biosoc.2015.25
– ident: bibr53-0306312719846557
  doi: 10.1525/pol.2007.30.2.305
– ident: bibr61-0306312719846557
  doi: 10.1002/sim.5841
– ident: bibr56-0306312719846557
  doi: 10.1098/rsta.2016.0122
– ident: bibr87-0306312719846557
  doi: 10.2139/ssrn.3057469
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Snippet 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...
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...
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SubjectTerms Accountability
Ambiguity
Anxiety
Attorneys
Big Data
Citizens
Companies
Computer Security - legislation & jurisprudence
Computer Security - standards
Data collection
Data integrity
Ethical dilemmas
Ethics
European Union
Fieldwork
General Data Protection Regulation
Law
Legislation
Personal control
Protection
Regulation
Research Personnel - psychology
Researchers
Social Responsibility
Transnationalism
Transparency
Uncertainty
Subtitle Dramas and dilemmas of data law
Title Impossible, unknowable, accountable
URI https://www.jstor.org/stable/48569102
https://journals.sagepub.com/doi/full/10.1177/0306312719846557
https://www.ncbi.nlm.nih.gov/pubmed/31057059
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https://www.proquest.com/docview/2232136909
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