INDEX
Academy of Nutrition and Dietetics, 7
Accountability, 25, 66, 71, 80, 88, 104, 108
Adaptability, 74, 109
Advanced consent, 158, 161, 163
Advanced Therapy Medicinal Products, 107, 112n12
Advocacy groups, 17, 79
Allocational vulnerability, 156
Alzheimer’s Association, 160
American Chemical Society, 95
American Society for Parenteral and Enteral Nutrition, 7
Animal research, 2–3, 8n4, 24, 29n15
AnimalTestInfo, 3
Animal welfare, 2, 14, 116
Anonymized data/anonymization, 45, 47, 48, 55–58, 68, 69, 74, 78, 79
Antiepileptic drug (AEDs), 75–76, 77
Arms Trade Treaty (2014), 139
Association for Responsible Research and Innovation in Genome Editing (ARRIGE), 6, 115–125
Association of Internet Researchers Ethics Working Committee, 58
AstraZeneca, 65
Australia, 123, 186
diet therapy, 174
drug therapy model, 189
Autonomy, 24, 29n14, 66, 68–70, 78, 79, 102, 103, 110, 162
and capacity to consent, 153
ethical principle of, 149–153
and informed consent, 150–153
Beauchamp & Childress, 24, 29n14, 149
Being in public, 51
Being public, 51
Beneficence, 24, 162
Benefit, as criteria for research, 72
Berkelely University, 119
Bias, 45, 47, 54, 67, 77, 120, 149, 195
Big Data, 45–47, 49–54
bias and representativeness of research, 54
claims against data sharing, 75
core values, attachment of, 67–75
data use, reuse, and misuse, 50–53
defined, 64–66
in genetic data, 77–79
in healthcare and life sciences, 63–80
for health professionals and researchers, 64–66
in health research, 77
online recruitment, 53
in public health, 76–77
research ethics in digital era, 54–56, 58
use in life sciences, 5
Bill & Melinda Gates Foundation (BMGF), 16
Biobanking and Biomolecular Resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), 60n20, 65
Code of Conduct for Health Research, 58
Bioethics, 14, 58, 69, 80, 155
Bioinformatics, 63, 65, 76
Biologic, Toxin and Weapons Convention (BTWC), 139
Biosafety, 87, 88, 90, 93, 118
Biosafety Level 3 (BSL 3), 90
Biosafety Level 4 (BSL 4), 90
Biotechnology and Biological Sciences Research Council (BBSRC), 3
Body mass index (BMI), 169, 178–179
Broad consent, 48, 49, 69–71, 79, 80
BROAD Institute-MIT, 119
Burtscher, Wolfgang, 28
Business Insider, 187–188
Cambridge Analytica, 52
Canadian Animal Care Committee, 3
Capacity to consent
autonomy and, 153
informed consent in persons without, 159–162
CBRN Security Culture, 95
Center for Infectious Diseases Research and Policy (CIDRAP), 36
Centers for Disease Control & Prevention (CDC), 35, 36, 39
Cervical cancer screening, in India, 15–16
Charlson Index, 178
Charpentier, Emmanuelle, 119
Charter of Fundamental Rights of the European Union, 47, 59n3
art. 1 (rights to human dignity), 47
art. 7 (respect of private and family life), 47
art. 8 (data protection), 47
art. 13 (right to freedom of arts and sciences), 47
art. 21 (non-discrimination), 47
Chemical Weapons Convention (CWC), 139
Child health data, 52
China
genome editing, 117, 123
international collaborative genetic research project, 16–17
Kadoorie Biobank, 65
Chinese Academy of Sciences, 111n5
Citizenry, 66
Civil security, 90, 91, 100
Clinical dementia research, 7, 147–164
ethical challenges and issues in, 158–159
informed consent in persons without capacity to consent, 159–162
ethical framework and decision-making in
autonomy, 149–153
decision-making capacity and competence, 153–155
vulnerability, 155–157
ethical questions, 162–163
recommendations for, 163–164
Clinical Trials Regulation, 103
Cognitive vulnerability, 156
College of Commissioners, 101
Comfort feeding, 7
Commission for the Study of Ethical Problems in Medicine & Biomedical and Behavioral Research, 79
Competence, 100, 103, 104, 150, 153–155, 162
“Complete Khoisan and Bantu Genomes from southern Africa”, 17
Convention for the Protection...