Index
ADHD (attention-deficit hyperactivity disorder), 205
advisory committees, potential bioinformation disclosers and, 221
affiliative self-fashioning, 54
African heritage, identity harms and, 204
Alaimo, Stacy, 92
ancestry tracing
anxiety, 209
APOE (Apolipoprotein E) gene, 141
APOE testing for risk of Alzheimer’s disease, 44, , 174
counselling and education about, 148
reactions to receiving results from,
recommendations regarding access/disclosure, 250
Article 8 of the European Convention on Human Rights (ECHR), , 250
Ashkenazi Jewish populations, BRCA-related cancers and, 155
Asperger’s syndrome, 101
attention-deficit hyperactivity disorder (ADHD), 205
autonomy, ,
BCIs (brain-computer interfaces), 260
bioethics, 3
bioinformation governance, 5,
biosocial identity-making, 54
biosociality, 54
bipolar disorder, 158
Blyth, Eric, 137
bodily doubt, 92
Bortolotti, Lisa, 108
brain-computer interfaces (BCIs), 260
Brandon, Priscilla, 97
BRCA-related cancers, Ashkenazi Jewish populations and, 155
BRCA Self-Concept Scale, 234
BRCA testing, 44, , 191
age at which it is sought, 146
desire to contribute to research concerning, 147
reactions to receiving results from,
breast cancer, 141
cancer, breast/ovarian, 141
Caribbean heritage, identity harms and, 204
case studies, list of, xiv
Cassam, Quassim, 94
the ‘characterization question’, 23
Chilibeck, Gillian, 148
CIOMS (Council for International Organizations of Medical Sciences) Guidelines, disclosure of health research findings and, 43
colorectal cancer, 112
comfortable narratives, 185
communication, identity-supporting,
competing interests, disclosure and,
conceptual and normative foundations, filling gaps in, ,
constraints on self-constituting narratives, 72
Council for International Organizations of Medical Sciences (CIOMS) Guidelines, disclosure of health research findings and, 43
counterstories, 197
damaging narrative contents, , 224
data, as distinguished from information, 13
Davidson, Larry, 169
de Melo-Martín, Inmaculada, 52
determinism, 48
diabetes, Type-1, 207
direct-to-consumer (DTC) genomic testing services. see DTC (direct-to-consumer) genomic testing services
disability paradox, 191
disclosure of bioinformation, , 12, 14, 16 see also under personal bioinformation
debates about, 18
identity interests in, 18
recommendations regarding,
distress
relationship to and distinction from identity interests, 209
donor conception, 15, 19, 174, 188
donor anonymity and, 38
encounters with, 19
the governance landscape and, 252
illustrative example concerning, 19,
information subjects’ experiences of,
narrative impacts and,
types of information involved, 124
information about
discovery of, 126
donor-conceived individuals’ legal entitlements to, , 126
parental disclosure of, 38,
recommendations regarding,
preference for/importance of knowing and, 135
Ravitsky on, 47
responsibilities for disclosure and, 241
social context and, 192
UK regulations and, , 124
Donor Sibling Registry, 132
DSD (differences in sex development), damaging narrative contents and, 203
DTC (direct-to-consumer) genomic testing services, 7, 9, 18, 44, 126, 192,
bioinformation governance issues and, 251
genetic-essentialist assumptions and, 49
misleading information and, 201
potential bioinformation disclosers and, 221
recommendations regarding access/disclosure,
responsible communication of health information and, 240
duty to help,
Edelman, Marian Wright, 197
Embodied Narratives
case studies, list of, xiv
guide to the chapters in this book,
terminology used in this book,
empirical bioethics, 121
entitlements to personal bioinformation in law,
epistemic qualities of bioinformation, , 200
ethical responsibilities for disclosure of bioinformation,
ethical foundations of,
limiting considerations and,
shared social responsibilities and, 244
European Convention on Human Rights (ECHR), Article, 8 of
right to identity and, , 250
European General Data Protection Regulation (GDPR), 41
European Study of Assisted Reproduction Families, 126
experiences, identity narratives and, 175
FDA (Food and Drug Administration), direct-to-consumer genomic testing services and, 44
feminist theories of self, 91
first-personal narration, 69
fMRI (functional magnetic resonance imaging), 158
Food and Drug Administration (FDA), direct-to-consumer genomic testing services and, 44
Fraassen, Bas van, 114
functional magnetic resonance imaging (fMRI), 158
future challenges for access to personal bioinformation, 262
GDI (General Definition of Information), 13
GDPR (European General Data Protection Regulation), 41
General Definition of Information (GDI), 13
genetic ancestry tracing, 8, 9, 54, 206
African ancestry tracing and, 196
Black British ancestry tracing and, 178
unreliability of, 206
genetic identity, 47
genetic risk, 19
illustrative example concerning,
information subjects’ experiences of encounters with,
narrative impacts of,
type of bioinformation involved,
recommendations regarding access/disclosure and, 221
the ‘genetic self’, 48
Gooding, Holly, 145
governance, 5,
group identity, 26
Hallowell, Nina, 146
Haraway, Donna, 191
Harris, John, 216
Haslanger, Sally, 52
the Havasupai people, 26
health research
identity harms and, 204
Healthcare Improvement Scotland, potential bioinformation disclosers and, 221
healthcare information
clinical actionability and, 210
healthcare professionals, as potential bioinformation disclosers, 220
Hekman, Susan, 92
helpfulness, , 254
Henschke, Adam, 21
hermeneutic role of bioinformation,
HFEA (Human Fertilisation and Embryology Authority), 38, 39
applying to for donor information, 126
the governance landscape and, 253
home test kit companies, potential bioinformation disclosers and, 221
Human Fertilisation and Embryology Act 1990 (HFE Act), 38
identity,
bioinformation impacts and, 8
constituting vs. revealing, 108
definitions of,
as a multi-stranded whole, 180
narrative theories of,
right to, under European Convention on Human Rights (ECHR), , 250
role of bioinformation in,
identity interests, 10,
ascertaining where they lie,
distinguishing from other interests,
fundamental identity interest and,
governance issues and,
information-related,
legal entitlements and, , 218
relationships between structure and contents,
responsibilities for meeting,
identity narratives, , , 198
the body and,
fundamental identity interest and,
inhabitability of, 186
knowledge of genetic parentage and,
negative impacts and, 178
personal bioinformation as a tool of,
vulnerability and, 223
identity-supporting disclosure practices,
Illes, Judy, 166
illustrative examples of encounters with bioinformation, 19,
image (public persona), 21
imaging services, potential bioinformation disclosers and, 221
infertility, 103
information, as distinguished from data, 13
information-related identity interests,
information subjects, 3, 16
entitlements to access personal bioinformation and, 8,
information interests of,
inhabitable narratives, 186
International Declaration on Human Genetic Data, 32
International Human Rights Law, 32
interpretation, 13
Kennett, Jeanette, 77
Keywood, Kirsty, 216
KH and Others v. Slovakia, 37
legal entitlements to personal bioinformation, ,
the lived body, 91
Lloyd, Genevieve, 67
Loughlin, Michael, 116
Lynch syndrome, 100
Mackenzie, Catriona, 23, 24, 62
on achievability, 84
on biological realities, 106
on capacities and capabilities, 79
on characteristics, 116
on coherence, 82
on identity harms, 203
on internal goods, 78
on interpretive frameworks, 96
on making sense of who we are, 76
on narrative contents, 65
on the relative integration of identity narratives, 82
on the self over time, 64
on Strawson, 80
magnetic resonance imaging (MRI), 158
MAOA gene, identity harms and, 204
Maori populations, 204
the material body, 91
Matthews, Steve, 77
memories and experiences, identity narratives and, 175
Merleau-Ponty, Maurice, 91
Meyers, Diana, 81
on achievability, 83
emergent intelligibility and, 77
on figurations, 196
on intersectional identities, 81
on self-descriptors, 194
Mikulic v. Croatia, genetic parentage and, 35
misleading information, , 224
MRI (magnetic resonance imaging), 158
Murdoch, Iris, 78
narrative coherence, 74
achievability of, 82
harm to caused by misleading information, 201
objections to,
recapped, 183
the value of, , 104,
narrative context, of identity significance, 193
narrative identity, theories of,
the body in,
narrative self-constitution, , 94
National Institute for Health and Care Excellence (NICE)
BRCA screening guidelines and, 142
potential bioinformation disclosers and, 221
need, vulnerability and,
Nelson, Hilde Lindemann, 62, 68, 196
on the early chapters of our lives, 137
on first-personal narration, 70
on identity narratives, 74
on oppressive master narratives, 87
Nelson, Jamie, 58
on how our lives connect with those of others, 137
on the opening pages of our biographies, 107
neural activity, 9
neurobiological self, 54
neuroessentialism, 49
neuroimaging, 10, 49, 175, 195
communication context and, 193
data from, algorithmic analyses of, 159
motivations for, 162
psychiatric neuroimaging and, 20,
neuroscience, reportings of in non-specialist media, 9
neurotechnologies, 49
NICE (National Institute for Health and Care Excellence)
BRCA screening guidelines and, 142
potential bioinformation disclosers and, 221
normative and conceptual foundations, filling gaps in, ,
normative roles,
numerical identity, 21
Odièvre v. France, 36
oppressive master narratives, 87
origins cases, in European Court of Human Rights (ECtHR),
ovarian cancer, 141
overactive thyroid, 103
Parry, Bronwyn, 51
personal bioinformation, 5, 16
access to
future challenges for, 262
information subjects’ entitlements in law and,
knowledge of genetic parentage and, 10
concerns about identity relevance and,
contexts in which encountered, 3, ,
contribution to embodied narratives and, 119
defined,
epistemic qualities of, , 200
examples of encounters with, 4, ,
identity significance of,
interpretive context and, 100
as a narrative tool,
normative roles and,
personal identity, 22
PET (positron emission tomography), 158
Pickersgill, Martyn, 167
policy research, potential bioinformation disclosers and, 221
positron emission tomography (PET), 158
potential bioinformation disclosers, responsibilities of,
practical identity, 23
practical self-characterisation, 25
principle of helpfulness, , 254
psychiatric neuroimaging
encounters with, 20
illustrative example concerning,
information subjects’ experiences and,
narrative impacts of,
type of bioinformation involved,
psychological distress
relationship to and distinction from identity interests, 209
public persona (image), 21
racial/ethnic profiling for forensic purposes, 204
Racine, Eric, 49
reality constraint, 73
reductionism, 48
relational narrativity, , 240
relational self-constitution, 137
right to identity
under European Convention on Human Rights (ECHR), , 250
under United Nations Convention on the Rights of the Child (UNCRC), 33
right to respect for private and family life, European Convention on Human Rights (ECHR) and, , 41, 45, 250
rights, 182
Roberts, Scott, 258
Roe, David, 169
Rogers, Wendy, 60, 115, 117
on coherence, concerning asymptomatic disease, 85
on narrative identity and asymptomatic disease, 208
Rose v. Secretary of State for Health, 38
Schechtman, Marya, 76, 77, 86
articulation constraint and, 103
on capacities, 85
on coherence, 84
on identity as characterisation, 25
on intelligibility, 81
on practical identity, 23
on prenarrative truth about the self, 109
on relational narrativity, 68
Scully, Jackie Leach, 239
self-constituting narratives, , 94
coherence and, 74
constraints on,
contents of, 65
objections to,
practical and evaluative capacities of,
selfhood, 63
shared social responsibilities, 244
sickle cell disease, 204
single-photon emission computed tomography (SPECT), 158
sleep-monitoring apps, 116
social construction, of identity significance, 191
social identity, 24
social responsibilities, shared, 244
somatic identity, 54
species identity, 21
SPECT (single-photon emission computed tomography), 158
Stewart, George, 33
structure of identity, as relates to contents,
terminology used in this book,
thyroid disease, 103
transphobia, oppressive master narratives and, 87
Type-1 diabetes, 207
UK Donor Conceived Register, 126
UNCRC (United Nations Convention on the Rights of the Child), 33
unification, 75
Universal Declaration of Human Rights, 32
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