Index
in Personalised cancer medicine

Index

100,000 Genomes Project 54, 119, 124, 152, 155–9, 164–5, 168–80, 223, 227, 237
23andMe 90
Abelson, J. 32
Abraham, J. 31, 65
access
to participants for research 223–36
to treatment as a patient 23, 246
Adam, B. 242–3
Adams, V. 23
adaptive trials 44–52, 118–25, 148, 245
advocacy 23, 31, 136, 208
ageing population 5
Agendia (company) 61
Aitman, Tim 156
Alectinib 198
algorithms 96–7
AstraZeneca (company) 122
austerity measures 5, 157
Avastin 36–7, 51, 184, 190–1, 203, 249
Bekelman, J. E. 186
Bell, Sir John 156
Bell, K. 42
benefit obtained from research 254–5
Benjamin, R. 212, 234, 237–8
Berg, Sancha 31
bioeconomy of genomic medicine 122, 154
‘biomarketization’ (Metzler) 91
biosociality 9, 249
blood cancer 119
Borad, M. J. 46
Bourret, P. 40
bowel cancer 191, 195
Braun, K. 162
breast cancer 29–35, 41, 58–64, 67, 119, 148, 188, 191, 223, 227, 239
early-stage 76–85
Breast Cancer Now (charity) 64–5
Brexit 11, 155
British Medical Journal 198
Brown, N. 52–3
Brown, P. 47
Bully's Prize (game show) 110
‘bureaucatic calculus’ 186
Callon, M. 26–7
Cambrosio, A. 25–8, 32–3, 44–6, 118
Cameron, David 157–9, 167
Cameron, Ivan 158–9
campaigns for access to drugs 36–7
‘can do’ attitude 244
Cancer Research UK (CRUK) 120–1, 124–5, 133, 186
cancer types 223
caring 241–55
blurred boundary with research 241, 254
forms of 244
at local level 244
on a macro scale 244
proliferation of 246
valuation of 243, 252
as work 245–6
central data repository 166
cervical cancer 36–7
charities and charitable donations 5–6, 185–6
chemotherapy 5, 59, 62–74, 77–86, 143, 188
China 155
clinical judgement 72
clinical trials 23–5, 118
clinical trials assistants (CTAs) 128–34, 227–8
clinicians
failure to participate in research 225–6
views on genomics 224–5
collaborative working 14
collective authorship 10
collective processes 248
Collins, P. A. 32
compassionate use of drugs 36, 187
complementary therapies 203–4
complexity of genomic medicine 185, 247
conditionality 115
Congenita (company) 154–5
consent process and consent forms 160–6, 169–81, 234, 238, 254
Corrigan, O. 161
cost considerations 23, 28, 74, 86
cost-effectiveness 23
crowdfunding 37, 51, 187–9, 197–209, 253
cultural capital 208
‘cutting edge’ treatments 251
Daily Mirror 198
data protection 176
Davies, Dame Sally 65
Davis, C. 38
day-to-day management of cancer symptoms 115
deCODE (company) 154
de Graaf, S. 47
deprived groups and areas 5, 118–19
digital platforms 90, 189, 208–9
disappointment, management of 106–12
dosages 24, 27
economic benefits from new treatments 250–1
embedding of new processes 119, 243
emotional labour 28, 106, 116, 206, 208, 226–7, 231–2, 253
empowerment 246
enthusiastic voices, privileging of 239
entrepreneurial approaches 250
‘epistemological activism’ 26, 30, 65
ethical approach to research 225, 238
ethical approval for research 223–5
ethnic minorities 221, 236–8
ethnographic research 14, 224
evidence-based practice 9, 24, 96
expectations, lowering of 119, 144
experimental value of trials 123
experimentation 185, 188, 198, 208, 241, 245, 250, 254
expert review groups 65
expertise
in challenging funding decisions 196–8, 208
new kinds of 250
Facebook 103, 176, 188, 194, 199–200, 204–5, 209
Farsides, B. 156
Felt, U. 212
feminism 7, 243
Finland 53–4
Fochler, M. 212
Food and Drug Administration (FDA) 27, 30, 41
foreshortened futures faced by some patients 99–100, 132, 148, 233
former patients’ motivation for agreeing to be interviewed 218
Fortun, M. 154
Fox, Liam 155
Frank, A. 9, 189
Fujita, M. 52
funding of treatment 183–7
fundraising 188, 199, 203–8, 253
hidden labour of 206
success in 204–8
future patients, benefiting of 112, 131–2, 136, 147, 175, 248–9
future-crafting 7–9, 241–7, 251–2, 255
Gabe, J. 32–3
gastrointestinal tumours (GIST) 26–7
gatekeepers 223–7
gendered hierarchies in medicine 227
gene-expression profiling 41, 59–63, 66, 68, 73–5, 83
Genetech (company) 30–1
genomes 1–3, 14
Genomic Health (company) 59, 61, 88
Genomic Medicine Service 92, 180
genomic workers, solidarities between 255
Genomics England 154–7, 162–5, 237, 243
genomics (and genomic medicine) 22–3, 52–6, 75–6, 88, 115, 118–19, 126–7, 142, 152–8, 162–4, 170, 181, 214–15, 224–8, 234–9, 242–3, 247, 252–4
clinicians’ views on 224–5
decentring of 252
exaggerated expectations from 253
institutionalisation and embedding of 243
level of patients’ understanding of 127, 235
portrayal and auditing of 254
Gerlitz, C. 188
Gillespie, C. 43, 83–4
Gleevec 25–32, 35–7, 40
Good, M. J. D. 184
Google 176
gratitude, expressions of 253
Groves, C. 242–3
Guardiant Health (company) 91
gynaecological cancers 88–116, 118, 148, 223
haematological cancers 171
Hamilton, A. B. 42
Hancock, Matt 124–5, 180
Haraway, D. 237
health inequalities 5, 214–15, 228, 237
Health and Social Care Act (2012) 159
Hedgecoe, A. 33–4, 68, 74
Helmond, A. 188
HER2 30–5
Herceptin 25, 30–7, 40, 46, 58, 68, 74
Hilgartner, S. 153–6, 164–5, 243
Hills, Dame Sue 180
hollowing-out of public services 5
hope, culture of 4
Horlick-Jones, T. 83
Horton, Richard 31
Human Genetics Commission 159
Human Genome Project 59, 157, 164–5
Human Genomics Strategy Group 156
humour, deployment of 178
Iceland 154, 160
Illumina (company) 91, 157, 180
imagined communities 10
imatinib see Gleevec
incidence of cancer 5
incrementalism and incremental change 115, 125
infrastructures, organisational and environmental 14
innovation 9–10, 244
Instagram 188
Institute of Cancer Research 35
institutional structures 13
insurance schemes 189–90, 192
Interlandi, J. 55
involvement, extent of 23, 25, 51
Jain, L. S. 250–1, 255
Jardine, Lisa 31
Jeans, whose Genes? (film) 237–8
Jin Xiaotao 155
Joffe, S. 186
Kadcyla 36, 187
Kazanjian, A. 42
Keating, P. 25–8, 32–3, 45–6, 118
King's Fund 159
laboratories, workload of 227
Lamprell, K. 48
language barriers 221
Latimer, J. 72
life expectancy 186
Llewellyn, H. 51
LoRusso, P. M. 46
lung cancer 36, 118–22, 148, 223, 227, 249
McKinsey Global Institute 157
Macmillan nurses 220
MammaPrint 41, 61, 63
marginalised communities 236–7
marginalised patients 12–14
marketisation of genomic data 154
Matrix Trial 120–49
totemic value of 143
Maughan, Tim 55
May, Theresa 155
media coverage and campaigns 31–3, 184, 208
metastatic cancer 102
Metzler, I. 89, 91
Michael, M. 9, 52–3, 212
middle-class bias 229–30, 236
Middleton, Gary 122
Mirati Therapeutics (company) 125
Mitchell, R. 53
molecular profiling 2,22, 26, 39–44, 118, 241, 252, 255
for advanced gynaecological cancer 88–116
‘molecular turn’ in cancer treatment 25, 33
monoclonal antibodies 25
Montgomery, C. M. 48, 149
Moorhead, Joanna 66
moral reflection 241
Moreira, T. 67
mortality rates 5
Nakagawa, H. 52
National Cancer Institute, US 30
National Health Service (NHS), UK 5–6, 31, 36, 53–4, 156–9, 181, 197–8, 207–8
NHS Predict tool 69–70, 77, 80
National Institute for Health and Care Excellence (NICE), UK 31, 36, 60–8, 86, 94, 187, 191, 243
Cancer Drugs Fund 184
Nelson, N. C. 41–2
neratinib 186
‘niche-busters’ 27
non-attendance at appointments 234
Novartis (company) 26
observation carried out for the present book 10
‘oncogene paradigm’ 24
Oncologica (company) 92
Oncotype DX 41, 60–3, 66–88, 92
optimisation of treatment 29, 52, 118, 149
optimism about prospects 241, 246
O’Shaughnessy, Lord 163
ovarian cancer 90, 103, 140
overtreatment 38
pancreatic cancer 225
Parker, Mike 159–60
participation in research 26, 212–13, 219–40
accessing candidates for 223–36
limitations of 212, 223, 231–4, 239
misbehaviour in the course of 212–13
obtaining value from 235, 251
practicalities of 176
reframed as obvious and routine 174–5
partnerships between private companies and NHS clinicians 92
patient collectives 26
patient participation 171–80
patient pathways 185
personalisation of prognosis, prediction and diagnosis 39–44
personalised cancer medicine 1–7, 12–15, 22–4, 47, 54–6, 62, 68, 76, 87, 94, 97–8, 106, 118–21, 126, 147–50, 166–7, 174, 181, 183–7, 192, 195, 197, 211–13, 223–36, 239–46, 249–55
delivery of 255
difficulty of 167
and holistic assessment of need 252
linked with the wider bioeconomy 211–12
origins of 23–4
patients’ responses to 28–9
politics and economics of 255
promise of 250, 253
personhood, ordinary and educated 180
Petersen, A. 188
petitioning by patients 26
P4 medicine 2, 211, 240
Pfizer (company) 122
pharmaceutical companies 29, 65–6, 127, 149, 180, 184–7, 207–8
Prainsack, B. 22–3
Prasad, Vinay 47
precision medicine 7, 120, 124, 186–7
Precision Medicine initiative (in the US) 22
pre-screening study (SMP2) for Matrix Trial 120–35, 139, 147
prevention of disease 5–6
pricing of drugs 27, 183, 187, 207
private healthcare 36, 38, 78, 92, 94, 98, 127, 187, 189–98, 249, 253
private patient units (PPUs) at NHS hospitals 192
professional status of clinicians 30
Prolaris 43
promissory scenarios 122, 240–1
promotional films 93
Prosigna (company) 60, 63, 67, 92
public engagement with research 236–9
Public and Patient Involvement groups for present study 2, 213–14, 236–7
Puig de la Bellacasa, M. P. 254
Rabeharisoa, V. 26–7
racism and racialisation 236–8
randomisation in trials 46
randomised controlled trials (RCTs) 94, 96, 100, 118
Rapp, R. 212
rare cancers 215, 223
reciprocity 248–9
recurrence risk 59, 62, 79–83, 101–2
‘reflexive governance’ (Braun et al.) 162
regional innovation funds 95
regulatory decision-making 67
relationship-building 222
remission 26, 28, 45
research governance 213
resilience 203
resistance to treatment 27, 246
resources, concern for see cost considerations
Rip, A. 24
Roche (company) 3–30, 156, 187
salience, lack of 112–14
Samuel, G. N. 156
Sapientia software 155
Schellekens, H. 186
science and technology studies (STS) 7, 12, 212, 247
scoping of personalised cancer medicine 213–22
Scottish Medicines Consortium 184
Scottish Scientific Advisory Council 43
self-funding see private healthcare
sense-making processes 248
Shannon, Kelly 50–1
shared understandings 247
SHIVA trial 45–7
Smith, Adam 155–6
smoking 118–19
social capital 148
social contract theory 6, 162
social media 90, 188, 197, 199, 204, 243
socio-economic circumstances 5
sociology of health and illness 9
speculative mono-futures, allure of 255
spending on cancer drugs 183
Stage, C. 200
Steinberg, D. L. 199, 250–1
Stevens, Simon 158
stigmatisation 118
stoicism 114
subtypes of cancer 2–3, 25, 29, 58, 249
Suchman, L. 126
Sullivan, Richard 186–7
survival rates 5, 59
‘tailored’ treatments 241
tamoxifen 218
targeted therapies 24–7, 44–5, 52, 92–3, 118–19, 122, 127, 147–8, 186–8, 196–7, 201, 203, 208, 252
pricing of 183
proliferation of 35–9
Tarkkala, H. 53
‘theragnostics’ 25
‘therapeutic misconception’ 160
transformative change 125, 164–71
Trial Assigning Individualised Options for Treatment (TAILORx) 66–7
trust 237–8
tumour growth 25
Tuskegee experiment 222
Tutton, R. 24
United States
Centers for Disease Control and Prevention 183
valuation studies 9–10
van Lente, H. 24
Vasella, Dan 26
VGT study 100
Virtue (company pseudonym), promises of 103–6
Waldby, C. 53
Wellcome Trust 2, 157
whole-genome sequencing (WGS) 52–4, 124, 150, 152, 157, 180, 245
Windrush affair 238
women's cancers 223
working-class patients 229
worth of a life 253
Yorkshire and Humber Regional Genomics Service 237
Zuboff, S. 188

Personalised cancer medicine

Future crafting in the genomic era

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