This chapter examines the challenges of the revised opt out system and the secondary use of health data in England. The analysis of this data could be very valuable for science and medical treatment as well as for the discovery of new drugs. For this reason, the UK government established the care.data program in 2013. The aim of the project was to build a central nationwide database for research and policy planning. However, the processing of personal data was planned without proper public engagement. Research has suggested that IT companies, such as in the Google DeepMind deal case, had access to other kinds of sensitive data and failed to comply with data protection law. Since May 2018, the government has launched the national data opt out system with the hope of regaining public trust. Nevertheless, there are no evidence of significant changes in the ND opt out, compared to the previous opt out system. Neither in the use of secondary data, nor in the choices that patients can make. The only notorious difference seems to be in the way that these options are communicated and framed to the patients. Most importantly, according to the new ND opt out, the type 1 opt out option, which is the only choice that truly stops data from being shared outside direct care, will be removed in 2020. According to the Behavioral Law and Economics literature (Nudge Theory), default rules, such as the revised opt out system in England, are very powerful, because people tend to stick to the default choices made readily available to them. The crucial question analyzed in this chapter is whether it is desirable for the UK government to stop promoting the type 1 opt outs, and whether this could be seen as a kind of hard paternalism.
翻译:本章探讨了英格兰修订后的退出系统与健康数据二次利用所面临的挑战。此类数据分析对于科学研究、医疗诊治以及新药发现具有重要价值。为此,英国政府于2013年设立了care.data项目,旨在构建服务于研究与政策制定的国家级中央数据库。然而,该计划在推进个人数据处理时未能充分开展公众参与。研究表明,信息技术企业(如谷歌DeepMind合作案例)曾获取其他类型的敏感数据,且未能遵守数据保护法规。自2018年5月起,政府推出国家数据退出系统以期重建公众信任。但相较于原有退出系统,新系统在数据二次利用方式及患者可选方案方面均未见显著变革。最引人注目的差异仅体现在向患者传达与呈现选项的方式上。尤为关键的是,根据新退出系统规定,真正能阻止数据在直接诊疗范围外共享的1类退出选项将于2020年取消。行为法律与经济学文献(助推理论)指出,默认规则(如英格兰修订的退出系统)具有强大影响力,因为人们往往倾向于维持既定的默认选择。本章核心议题在于:英国政府停止推行1类退出选项是否合理,以及此举是否可被视为一种强硬的家长式干预。