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

TY - CHAP

T1 - Nudging Consent & the New Opt-Out System to the Processing of Health Data in England

AU - Meszaros, Janos

AU - Ho, Chih-hsing

AU - Corrales Compagnucci, Marcelo

PY - 2019/12/13

Y1 - 2019/12/13

N2 - 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” (ND 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.”

AB - 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” (ND 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.”

KW - Faculty of Law

KW - Nudge Theory, choice architectures, opt-out system, personal data, GDPR, ND opt-out, hard paternalism

M3 - Book chapter

SN - 978-981-15-1349-7

T3 - Perspectives in Law, Business and Innovation

SP - 61

EP - 82

BT - Legal Tech and the New Sharing Economy

A2 - Corrales Compagnucci, Marcelo

A2 - Forgó, Nikolaus

A2 - Kono, Toshiyuki

A2 - Teramoto, Shinto

A2 - Vermeulen, Erik

PB - Springer Nature Singapore

CY - Singapore

ER -