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

In: Legal Tech and the New Sharing Economy

Author

Listed:
  • Janos Meszaros

    (Institute of European and American Studies, Academia Sinica)

  • Chih-hsing Ho

    (Institute of European and American Studies, Academia Sinica)

  • Marcelo Corrales Compagnucci

    (Faculty of Law, University of Copenhagen)

Abstract

This chapter examines the challenges of the revised opt-out systemOpt-out system and the secondary use of health dataHealth data in England. The analysis of this dataData could be valuable for science and medical treatment as well as for the discovery of new drugs. For this reason, the UKUnited Kingdom (UK) government established the “care.dataData 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 dataData was planned without proper public engagement. Research has suggested that ITInformation Technology (IT) companies—such as in the Google DeepMind deal case—had access to sensitive dataData and failed to comply with data protectionData protection law. Since May 2018, the government has launched the “national data opt-outNational Data Opt-out System (ND opt-out)” (ND opt-out) system with the hope of regaining public trustTrust. Nevertheless, there is no evidence of significant changes in the ND opt-out, compared to the previous opt-out systemOpt-out system. Neither in the use of secondary dataData, 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 dataData from being shared outside direct care—will be removed in 2020. According to the Behavioral Law and Economics literature (Nudge TheoryNudge theory), default rulesDefault rules—such as the revised opt-out systemOpt-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 UKUnited Kingdom (UK) government to stop promoting the type-1 opt-outs, and whether this could be seen as a kind of “hard paternalism.”

Suggested Citation

  • Janos Meszaros & Chih-hsing Ho & Marcelo Corrales Compagnucci, 2020. "Nudging Consent and the New Opt-Out System to the Processing of Health Data in England," Perspectives in Law, Business and Innovation, in: Marcelo Corrales Compagnucci & Nikolaus Forgó & Toshiyuki Kono & Shinto Teramoto & Erik P. M. Vermeu (ed.), Legal Tech and the New Sharing Economy, pages 93-113, Springer.
    • Handle: RePEc:spr:perchp:978-981-15-1350-3_6
    DOI: 10.1007/978-981-15-1350-3_5
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