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

被引：4
|
作者：
Bharti, Nishtha [1 ,2 ]
O'Donovan, Cian [3 ]
Smallman, Melanie [3 ]
Wilson, James [4 ]
机构：
[1] Indian Inst Technol, Dept Humanities & Social Sci, Delhi, India
[2] Indian Inst Technol, Intersect Sci & Technol Studies STS & Polit Theor, Delhi, India
[3] UCL, Dept Sci & Technol Studies, London, England
[4] UCL, Philosophy, London, England
来源：
ENGAGING SCIENCE TECHNOLOGY AND SOCIETY | 2021年 / 7卷
关键词：
trust; health data; public engagement; National Health Service (NHS); GPDPR; SCIENCE-AND-TECHNOLOGY; BIG DATA; PARTICIPATION; DEMOCRACY; CITIZEN;
D O I：
10.17351/ests2021.1197
中图分类号：
D58 [社会生活与社会问题]; C913 [社会生活与社会问题];
学科分类号：
摘要：
In England, a new scheme for collating and sharing General Practice data has faced resistance from various quarters and has been deferred repeatedly. 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 licence in addition to legal assurances, and the lessons in it of global pertinence.
引用
收藏
页码：125 / 133
页数：9
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