Department of Anthropology, University of Colorado Boulder, USA.
Soc Stud Sci. 2019 Aug;49(4):503-530. doi: 10.1177/0306312719846557. Epub 2019 May 6.
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.
2018 年 5 月 25 日,欧盟的《通用数据保护条例》(GDPR)生效。欧盟公民对个人数据的控制得到加强,而公司和组织则承担起更广泛的责任,这些责任体现在透明度和问责制等广泛原则中。鉴于该法规的范围旨在协调 28 个成员国之间的数据做法,并考虑到对数据收集的不同关注,因此 GDPR 对欧盟和全球的个人都具有重大影响。虽然 GDPR 主要旨在监管科技公司,但它对科学研究中的数据使用也具有重要影响。我通过在瑞典对研究人员、律师和法律学者进行民族志实地调查,认为 GDPR 的灵活问责原则有效地鼓励研究人员反思其道德责任,但也可能成为焦虑的根源,并产生意想不到的结果。我与之交谈的许多研究人员对研究数据使用的“不可能”法律要求表示深切的不确定性。尽管有法律文本和解释,但我认为我们应该认真对待研究人员对“不可知”数据法的担忧。许多研究人员对法律模糊性的感觉使他们通过将自己视为“数据背后的真实人”来重新思考自己的数据实践和自己的道德主体,这些人被不同地表述为渴望数据用于社会利益的瑞典人口或渴望研究结果的跨国公众。归因于人的、人群和公众的意图——研究人员只能以数据的抽象形式遇到这些人——为各种数据安全和共享决策赋予了道德权重,这些决策有时是相互冲突的。最终,研究人员对自己无法辨别“真实人”的愿望的担忧为各种解决方案提供了新的吸引力,这些解决方案尽管有缺陷,但承诺减轻个人数据的道德负担。