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

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.

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

“…They analyze how epidemiological risk scores work as ‘accountability devices’ and show how they, despite their algorithmic character, continue to be in the making. Cool (2019) explores what she terms ‘accountability anxiety’ as a particular reaction among population researchers in Sweden to European data regulation and potentially conflicting demands of data protection and data sharing – thus showing how researchers negotiate the burden of compliance, legal uncertainties, and ethical concerns. Hoeyer (2019) discusses the politics of personalized medicine in the hyper-digitalized Danish healthcare system and suggests that data might be useful not so much for the information they convey, but for the way in which they deliver a promise of future knowledge, one that serves to postpone calls for present action on inequality in health.…”

“…How public health law, policy, and practice operate is profoundly shaped by the social and material infrastructures through which data on health needs are generated and populations come into being as objects of knowledge. This special issue presents examples from infrastructures and practices enacted: in the US (Hogle, 2019), the UK (Pickersgill, 2019), Sweden (Cool, 2019), Germany (Amelang and Bauer, 2019; Kalender and Holmberg, 2019), Denmark (Hoeyer, 2019), and through international, partly commercial, networks (Kerr et al, 2019). We illustrate the diversity of practices in different public health settings to illustrate how STS can investigate technologically mediated construction of populations and the translation of this knowledge into societal action.…”

Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

“…While it is recognized that participation in research is based on affirmative, unambiguous, voluntary, informed, and specific consent (Mendelson, 2018), people with advanced dementia or intellectual and developmental disabilities are not able to give informed consent or understand the consequences of data acquisition (Friedman and Rizzolo, 2017;Chalghoumi et al, 2019;Timmers et al, 2019). Article 6 of the GDPR addresses this issue by including provisions that protecting persons with dementia and their relatives from being coerced into providing consent without awareness of how their data will be used (Cool, 2019;Crutzen et al, 2019). Despite this regulation, local legislation differs between European countries (de Lange et al, 2019).…”

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

“…In addition to one with our colleague, who conducted the validation of the PSFS for the municipality, the interviews included five people working with reablement data infrastructures in the municipality, and two working with national standards. During this period, political uses of data became subject to what Cool (2019) has termed increased “accountability anxiety.” Consequently, some of our informants have had to insist on strict protection of their identity. It illustrates the difficulties staff have with speaking against the interpretation and use of data that management claims, but, unfortunately, it means that we have had to present this material with less transparency than what would have been academically desirable.…”