Index

Entries in bold refer to tables; entries in italics refer to figures. References of the form “XnY” refer to note Y on page X.

Access to COVID-19 Tools (ACT) Accelerator 180
accountability 4, 49
in data ethics 84
as ethical principle 77
and ethical values 131
and global health governance 173, 1757, 1815
and public engagement 141
in social care 646, 69
Ada Lovelace Institute 150, 162, 164, 166
adult-centrism 109
Adult Social Care Outcomes Framework (ASCOF) 624, 68
Adult Social Care Survey 64
advance purchase agreements (APAs) 1813
advenants 224
Aebischer, Pascale 5
agency 43, 62, 65, 151, 155, 163
agenda day method 95, 1029
Agenda for Sustainable Development 110
AIDS epidemic 15
allocation problems 58
ambivalence 159, 164
Arnstein, Sherry 124, 127
artificial intelligence 94
Arts and Humanities Research Council (AHRC) xii, 94
authority to act, co-producing 879
autonomy, and relationships 434
behavioural fatigue 127
Bingham Centre for the Rule of Law 150, 1624, 166
Black, Asian and Minority Ethnic people 56, 66, 98, 116n5, 134
Brazil 141
Burall, Simon 139
burnout xix, 46
Burton, Jenny 60
Callard, Felicity 14, 16
Camden Council 13940
Capacity Tracker 58, 63, 66, 82
care
in care homes 70
and infection prevention 30, 39
markers of 44
as value 645
care homes xv, xix, 7
data on 5661, 656, 701, 75, 823
deaths in 545, 5960
protective ring around 812, 87
staff vaccinations in 63, 129
Challenge Trials 78
Chatham House Rules 143n12
child- and youth-led organisations 112
child facilitators 102, 105, 107
children
acting on views of 113
engaging with 11113
impact of COVID-19 response on 97100
lack of focus on 101
participation in decision-making 10911
speaking for themselves 1012
vaccination of 130
views on COVID-19 response 946, 1029, 11314
Children’s Commissioners 113
children’s rights 8, 96
Children’s Rights Impact Assessments 10910
China 176
cholera 160, 162
Citizens’ Assemblies 126, 140
Citizens’ Juries 9, 126, 1501, 153, 1624, 1667
civil liberties 8, 88, 157
Coalition for Epidemic Preparedness Innovation (CEPI) 181
collective dialogue, real-time 151
collective stories 26
Committee on Standards in Public Life 138
commonality 22, 26
common-sense philosophy 127
comorbidities 56, 130
competence, reputations of 139
confidence, crises of 168
Conservative Party 84, 87, 1312, 141
consultation documents 111, 116n15
contact tracing
data generated by 161
engagement with 127
removal of requirements for 83
and surveillance 1557
contact tracing apps 80, 83, 856, 126
contemporaneity 246
Control of Patient Information (COPI) 801, 834, 86
Cooper, Fred 12
co-presence 24, 26
CoRAY Project 126
Coronavirus Research Centre (CRC) 162
Councils with Adult Social Services Responsibilities (CASSRs) 62
COVAX Facility 1734, 179, 1815, 185n4
COVID-19 pandemic
acceptable risks in 78
arts and humanities research during xiixxii, 12, 6
care infrastructure in 63
and children’s rights 100
decision making in 35, 910, 65
declaring an end to 834, 88
impact on democracy 1503
and inequalities 66
infection prevention and care in 2930, 32, 46
life before 23
and policy dynamism 50
reconfiguration of possibility 21
and relationships 367
temporality of 1415
use of data in 56, 7981, 88
critical workers 98, 115n4
cronyism 131
Cummings, Dominic 1545
data
and authority to act 878
creating vulnerabilities 867
quality of 15960
Data Charter 13940
data collection xvi, 801
and contact tracing 156
end of 89
ethical evaluations of 86
online 105
in social care 64, 66
via technology 168n1
data consent systems 70
data-driven decision-making 89, 945
children’s views on 103, 1078
impact on children 967, 99, 1012, 11315
and UKGDPR 106
data episodes 7984, 87
data ethics 78, 77, 845, 87, 89
datafication of children 96, 101
data governance 667
data infrastructures 545, 578
and democracy 85
for social care 55, 607, 69, 82
data not dates approach 94
data pandemic 7981
data protection 101, 156
Data Saves Lives 678
data sharing 86, 967, 1078
data sources
multiple 81
novel 60
data use 78
ethical 78
dataveillance 101, 114
death 2
visibility of 19
decentralised logics 65
decision-making
academic influence on 135
citizen participation in 141
and data infrastructures 57
emergency 151
ethical tensions of 137
long-term structures of 139
pandemic-specific approaches 32, 501
public engagement in 124
public involvement in 35
and relationships 301, 37, 434, 467, 48
self-mythologised model of 129
values informing 33, 131, 133, 159
deliberation, institutionalising 166, 168
deliberative approaches 126, 140
deliberative engagement 125
democracy
core principles of 150
pausing 1502, 166
and quality of science 15960
democratic nation-states 89, 1501, 1534, 161, 164, 1678
democratic spaces 3
denominator problem 5760
Dewey, John 127
digital infrastructures 58
digital platforms, age-appropriate 112
disease 14
aetiological framework of 1819
drama, epidemics as 1214, 1617, 20, 26
dynamism 50
Ebola 173, 17880
educational inequalities 98
electronic relationships 367
emergence, of epidemics 1617, 19, 27n2
Emergency Committee 1789
emergency data ethics 8, 89
emergency powers
and data use 7
ending 86
and the social contract 1512
UK use of 34
WHO use of 9, 1778, 184
see also state of emergency
Emerging Minds 126
endemic disease 1314, 16, 26
end of life 34, 38
en-present-ment 25
epidemicity 1720, 22, 245
epidemics
as extraordinary events 1718
as life-event 204
literary form of 6, 1217
as nested 246
visualising 1920
epistemic authority 184
epistemic framings xxv, 5
epistemic power 59
epistemological pluralism 159, 1612, 1656
equitable access to vaccines 1815, 185n4
ethical analysis 69, 132
ethical challenges 6, 2930, 335, 45, 47, 1312
ethical deliberations 125, 142
ethical expertise 1367
ethical frameworks 32, 47, 856
ethical perspectives 140, 142n1
ethical principles 778
ethical unit of analysis 64
ethical values
in decision-making 489, 1312, 134, 1367, 142
in maternity and paediatric care 324
ethics 2
relational 44
ethics advice 10, 845
Ethics Advisory Group to NHSX 77, 90n1
ethics washing 845, 89
European Citizens’ Panels (ECPs) 140
European Convention on Human Rights (ECHR) 98, 116n6
European Union, Conference on the Future of Europe 140
event, senses of 1724, 26
event-ness 24
events, interpretative function of 23
events and conferences 11112
everyday life xxiii, 12, 85
extraordinariness 1718
Fair Allocation Framework 182
fairness 4950, 77, 84, 86
Fitzgerald, Des 1
focus groups 335, 39, 45
for children 112
on public engagement 125, 129
freedom-loving 127, 142n3
freedom of movement 79, 158, 163
freedoms, personal 87, 130, 165
free school meals 96
future, evential 224
Gavi the Vaccine Alliance 1814
Geidt, Christopher 138
General Practice Data for Planning and Research 163
Gibson, Michael 546
global health governance (GHG) 9, 172, 1747
Goldacre Report 679
good governance 4, 9, 168, 185
and accountability 69
citizens’ juries and 1634
during the pandemic 150, 153
and international organisations 1734
principles of 4, 150, 164, 167, 184
of technologies 164, 165
governance shift 181
Gray, Sue 84, 155
Greene, Jeremy 15
green space, public 116n5
H1N1 Influenza pandemic 1834
Hancock, Matt 812
hard-to-reach children 112
Harris, Donald 546
Health and Care Act 2022 68
healthcare policy, relational approach to 47
healthcare professionals xviiixix
ability to care 7, 2931
and moral distress 34
relationship with patients 402
safety of 46
and senior decision-makers 33, 389
working from home 40
Health Data Research UK 126
health emergencies
principles for decision-making 165
WHO and 1724, 1779, 184
Healy, Margaret 19
HEPI (Higher Education Policy Institute) xiii
hermeneutics 21, 26
Hobbes, Thomas 152
home-schooled children xvi, 111
home working 133
Hopkins Van Mil (HVM) 1316, 140
House of Lords 4, 1401
human connections xxv, 2, 65
human rights xviii, 1678
and children’s rights 100, 114
and surveillance 77
human stories 1
Iceland 141
illiberal democracies 150
illness time 15
immediacy xx, 23
Independent Commission on UK Public Health Emergency Powers 4
Independent Oversight and Advisory Committee (IOAC) 180
Index of Multiple Deprivation (IMD) 103
infection prevention 2, 67
and care 2930
impact on relationships 401, 44, 46
infectiousness 13, 19, 21
information flow, one-way 128, 143n5
information governance 56, 60, 667
informing decisions 94, 136
Institute for Government Timeline 789
institutional approaches 43
Integrated Care Systems 68
intelligibility 13, 20, 23
International Health Regulations 173, 1769, 184
international law 173, 184
international organisations 9, 1745, 184
Investing in Children 8, 95, 102
invisibility 89
Israel 154
Jacobellis v. Ohio 175
Johns Hopkins data dashboard 1612
Johnson, Boris 13, 79, 84, 878, 131
Joint Council of Vaccination and Immunisation (JCVI) 130
justice xix, xxvii
crossgenerational xiii
as ethical principle 77
Keller, Richard 15
key workers xviii, 2, 97
knowledge
deep 138
proposition and performative 136
Lachenal, Guillaume 15
large hospitals, collaboration within 36
leadership, physically remote 37
learning disabilities 60
legitimacy
and deliberative processes 144n15, 153, 167
and democratic principles 150
and global health governance 1745, 177, 185
legitimacy to act 878
liberal democracies 150, 1524
life-events 6, 16, 206
life-stories 26
lived experience xxii, 17
lockdowns
children in 979
decision-making on 8, 101
democracy in 1501
in the UK 2, 33, 7980, 834, 127
logic
dramaturgic 12, 14
relational 43
long COVID xix, 1415, 212, 134
Magnus, Laurie 138
management, top-down 68
market-oriented logics 65
masks 36
children’s views on 105, 109
maternity and paediatric services 2933, 3542
family in 445
Maternity Voices Partnership (MVP) 35, 51n4
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) 14
mental health xiii, 98, 134
Moral and Ethical Advisory Group (MEAG) 138
moral distress 31, 34, 46, 51n3
morbidity xvii, 14, 1819
mortality 14, 1819, 60
mutual aid 36, 46
narratives xxvxxvi, 12, 56, 124
National Audit Office (NAO) 1567
National Health Service 6
capacity to treat children 98
contact tracing by 80, 85, 90n1, 97, 105
convergence of systems and services 68
data systems 589
digital arm of see NHSX
discharge decisions 57
maternity and paediatric services in 29, 313
priority to protect 82
staff safety 45
neglect 89
NHS see National Health Service
NHS COVID Data Store 81
NHS Test and Trace 67, 99, 105, 1567
NHSX 77, 80
Nicholas, Rachael 5
9/11 terrorist attacks 86
Nolan Principles of Public Life 85, 138
non-discrimination 989, 111, 165
non-government organisations (NGOs) 113, 139, 172
non-maleficence 77
Northumbria University 94, 103
Observatory for Monitoring Data-Driven Approaches to COVID-19 (OMDDAC) 946, 1024, 10811, 113
Office of National Statistics (ONS) 812
Office of Qualifications and Examinations Regulation (OFQUAL) 99, 116n7
online engagement xiv, 104
opacity 131
open society 15960, 162, 166
organisational rules 47
Organisation for Economic and Cultural Development (OECD) 125, 144n15
overreach 9, 151, 167
over-surveillance 65, 86
Palantir 81
Pandemic and Beyond series xii, xivxvii, xxixxvi, xxviin2, 5
pandemic ethics 133, 137
Pandemic Influenza Ethical Framework 85
Pandemic Influenza Preparedness Framework 173
pandemic rules 3, 56
pandemics, definition of 27n1
pandemic time xix, 51
participation
ladder of 124, 12930, 132, 1401
Lundy’s model of 11011, 113
participatory budgeting 141
participatory democracy 139, 141
participatory engagement 135, 142, 143n5
participatory governance 125, 13940
participatory infrastructures 9, 151, 167
participatory turn 167
partnership, in citizen participation 129
Partygate scandal 4, 84, 88, 131, 143n7
Patel, Reema 10n2
Patient and Public Involvement (PPI) 35
patient relationships 401
Pelling, Margaret 13
people-in-relationships 44
performative language 19
personal data 96
personal fulfilment xxv, 2
personal protective equipment (PPE) xv, 37, 40, 59, 82, 87
allocation decisions 59, 63
and maternity care 30, 378, 40, 45
procurement scandals 67
PHEIC (Public Health Emergency of International Concern) 17, 27n2, 1789
phenomenological theory 17
plague writing 19, 25
police, access to COVID-19 data 103, 1078, 155
policymaking
and epistemological pluralism 159, 162, 166
ethical influence over 134, 136, 1389
impact on those affected 132
informing 129
pandemic 1356
publics involved in 1245, 134, 142
Popper, Karl 159, 162
Porto Alegre 141
possibility, reconfiguration of 18, 212
poverty xix, 7, 98, 134
PPE see personal protective equipment
privacy
of children 99
and contact tracing 801, 1557
as ethical principle 77
and public health 86
violation of 63, 66
psychologists, support for healthcare professionals 34, 42
public dialogue 125, 1323, 135, 140, 142
public engagement 89, 124
ethical analysis of 132
inadequacies in UK government 1269, 131
institutionalised 141
in the pandemic 1256
role of xxv, 5
public ethics 138
public health xxv, 2
in decision-making 56, 130
red lines for 166
public involvement 35, 134, 137
Public-Private-Partnership (PPP) 172, 181, 185
publics 8
informing and influencing 127
perspectives of 1245, 13940
in UK decision-making 12930
use of term 142n1
public values 125, 1323, 13940, 142n1
QCovid algorithm 97
racism xix
rationality, and relationality 434
Rawls, John 152
red lines 164, 166
regulatory frameworks 64, 125, 163
relational agents 43
relationality 7, 312, 437, 49
relational processes 51n8
relational values 65
relationships
damage caused to 401
enactment of 50
in healthcare decision-making 489
in maternity care 7, 303, 3542
networks of 425
risks of disrupting 457
Renaissance, plague writing of 19
representativeness 104, 132
research ethics 78
Reset Ethics project 29, 313, 51
responsibility
as ethical principle 77
in relational ethics 44
rights-based approaches 89
risk aversion 78
Romano, Claude 18, 212, 246
Rosenberg, Charles 1215, 19, 23, 26
Rourke, Elizabeth 21, 23
Rousseau, Jean-Jacques 152
rule of law xxv, 2, 9, 150, 1678
abrogation of 1545
citizens’ juries and 1634
SARS (severe acute respiratory syndrome) 1723
SARS-CoV-2 see COVID-19 pandemic
school closures 8, 95, 978, 101, 105, 109, 115
school grades, algorithmic determination of 1034, 107
“the science” xxv, 1, 6, 124, 129
science-led approach 159, 1612
Scientific Advisory Group for Emergencies (SAGE) 130
scientisation 167
scientism 159
Scottish government 126
selfhood, past and current 25
self-isolation 8, 83, 94
police monitoring of 1034, 108
senior decision-makers 33, 378, 46
shame 23
Shielded Patients List 163
Singapore 155
Slack, Paul 13
Smallman, Melanie 65
Snow, John 1601
Snowden, Frank 12
social care xiv, 7
complexity of 613, 67
data infrastructure for 545, 82
data policy for 679
ethical issues in 138
missing data for 5660, 87
multiple scales of 657
values of 635
what data measures in 6971
Social Care White Paper 2021 68
social contract 1513, 155
social distancing xv, 8
impact on children of 98
and interviews with children 102, 104
and maternity care 34, 412, 45
social distancing rules 30, 45, 127
social groupings xxv, 2
social media
children’s use of 101, 106
and data pandemic 79
recruitment to focus groups on 35
solidarity 137, 143n13, 174
Spiegelhalter, David 114
state of emergency 8, 1501, 1534
Steel, David 13
stigma 3
Sunak, Rishi 138
sunset clauses 166
surveillance 60, 66, 89
and democracy 1546
and ethical principles 778
and vaccine passports 158
wastewater testing as 104
surveillance infrastructure 85
Swiss cheese model 143n10
syndemic 99
system performativity 623
Taiwan 140
technologies, rapid acceleration of 155
temporality xix, 1416, 22, 256
Temporary Recommendations 176, 178
test and trace 83, 85, 88
Thomas, Gaëtan 15
tokenism 127, 129
Tony Blair Institute for Global Change 158
transparency
in data ethics 84
in emergency contexts 89
as ethical principle 77
and global health governance 1757, 181, 185
lack of 37, 85, 156, 1767, 1834
and public engagement 132, 1345, 141
transparent communication 38
travel restrictions 105, 172, 176
trust
and contact tracing 157
and global health governance 1746
and transparency 1345
trusted research environments (TREs) 69
trustworthiness 141, 153, 165
Twain, Mark 160
UK see United Kingdom
underfunding, chronic 180
under-surveillance 86
United Kingdom
care outside hospitals 61
contact tracing in 1567
COVID-19 response in xviixix, 14, 33
data and COVID-19 in 7884
Data Ethics Framework 84
data infrastructures in 57
deliberative events in 133
emergency powers in 151, 154
lifting restrictions in 20, 12931
lockdowns in 978
participatory governance in 140
research funding in xxi
self-isolation rules in 29
social care sector in 545, 59, 701
temporary data measures in 667
vaccine passports in 1578
United Kingdom General Data Protection Regulation (UKGDPR) 1067
United Kingdom Pandemic Ethics Accelerator 125, 1312, 134, 1379, 142
United Kingdom Research and Innovation (UKRI) xiv, xvixvii, xxviin2, 137
United Nations Convention on the Rights of the Child (UNCRC) 96, 98100, 106, 11011, 11415, 115n2, 116n6
vaccine certification 127, 137, 1578
Vaccine Deployment Initiative (VDI) 1834
vaccine mandates 129
vaccine nationalism 174
vaccine passports 1578, 161, 163, 166
vaccine procurement 182
value-free policymaking 12931
value judgements 634, 140
Vargha, Dora 15
voices, missing 8
vulnerabilities xiii, xxiv, 26
creating 82, 867
vulnerable children 978
wastewater testing 1035, 107
wave graph 19
welfare state 7, 61, 87
Westminster policy workshop 1349
WHO see World Health Organization
working practices, changed 7, 29, 334, 40, 42
World Health Organization (WHO) xviii, xxv, 5, 9, 1723
good governance of 1778
Guidance for Managing Ethical Issues in Infectious Disease 78
Health Emergencies programme (WHE) 17981, 185
on pandemics 27n1
trust and legitimacy of 1747, 1845
World Medical Association 78
Zoom 1, 36, 41, 102
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