Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions

Nishtha Bharti; Cian O'Donovan; Melanie Smallman; James Wilson

doi:10.17351/ests2021.1197

Nishtha Bharti Indian Institute of Technology (IIT), Delhi https://orcid.org/0000-0003-3329-7990
Dr Cian O'Donovan University College London (UCL)
Dr. Melanie Smallman University College London (UCL)
Prof. James Wilson University College London (UCL)

DOI: https://doi.org/10.17351/ests2021.1197

Abstract

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence.

Author Biographies

Nishtha Bharti, Indian Institute of Technology (IIT), Delhi

Nishtha Bharti is a doctoral candidate at the Department of Humanities and Social Sciences, Indian Institute of Technology (IIT), Delhi, where she works at the intersection of Science and Technology Studies (STS) and political theory.

Dr Cian O'Donovan, University College London (UCL)

Cian O’Donovan is a researcher at the Department of Science and Technology Studies, University College London.

Dr. Melanie Smallman, University College London (UCL)

Melanie Smallman is Associate Professor in the Department of Science and Technology Studies at University College London and a Fellow at the Alan Turing Institute.

Prof. James Wilson, University College London (UCL)

James Wilson is Professor of Philosophy at University College London, and is author of Philosophy for Public Health and Public Policy: Beyond the Neglectful State (Oxford University Press 2021).