Nudging Consent & the New Opt-Out System to the Processing of Health Data in England

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 and the discovery of new drugs. For this reason, the UK government established the “care.data program” in 2013. The project aimed 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” (ND opt-out) system to regain public trust.Nevertheless, there is 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 patients' choices. The only notorious difference seems to be how these options are communicated and framed to the patients. Most importantly, according to the new ND opt-out, the type-1 opt-out option – the only choice that genuinely 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 compelling because people tend to stick to the default choices readily available to them. The crucial question analysed in this chapter is whether the UK government should stop promoting the type-1 opt-outs and whether this could be seen as “hard paternalism.”