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

22 Pages Posted: 11 May 2022

See all articles by Janos Meszaros

Janos Meszaros

KU Leuven

Chih-Hsing Ho

Academia Sinica - Institute of European and American Studies

Marcelo Corrales Compagnucci

Centre for Advanced Studies in Biomedical Innovation Law (CeBIL), Faculty of Law, University of Copenhagen

Date Written: April 19, 2022

Abstract

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.”

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

Suggested Citation

Meszaros, Janos and Ho, Chih-Hsing and Corrales Compagnucci, Marcelo, Nudging Consent & the New Opt-Out System to the Processing of Health Data in England (April 19, 2022). Available at SSRN: https://ssrn.com/abstract=4087791 or http://dx.doi.org/10.2139/ssrn.4087791

Janos Meszaros (Contact Author)

KU Leuven ( email )

Oude Markt 13
Leuven, Vlaams-Brabant 3000
Belgium

Chih-Hsing Ho

Academia Sinica - Institute of European and American Studies ( email )

Nankang
Taipei, 11529
Taiwan

Marcelo Corrales Compagnucci

Centre for Advanced Studies in Biomedical Innovation Law (CeBIL), Faculty of Law, University of Copenhagen ( email )

Karen Blixens Plads 16
Copenhagen, Copenhagen DK-2300
Denmark

HOME PAGE: http://https://research.ku.dk/search/?pure=en%2Fpersons%2F662698

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