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 of Human Rights

, 59n2

Article

, 13, 122

Coronary Health and Improvement Program

, 194

Corrective fairness

, 25

Council of Europe (CoE)

, 57, 60n17, 111n6

Convention for the Protection of Human Rights and Fundamental Freedoms

, 59n2

Council of State, France

, 106, 121

Court of Justice of the European Union

, 106, 121

Crick Institute

, 117

CRISPR (Clustered Regularly Interspaced Short Palindromic Repeat) array

, 106, 107, 115–122, 124

CRISPR-Cas9 system

, 90, 99, 100, 102–108, 117, 120, 122, 139

Cultural sensitivity

, 23

peer educators for sex workers

, 22

safety and ethics

, 86–87

Culture of safety and security, shaping

, 85–95

added value of

, 94

current and future direction of

, 93–84

ethics review to safety governance in emerging technologies, using

, 89–90

ethics review to security governance in emerging technologies, using

, 92–93

Framework Program

, 9, 94–95

safety governance

, 87–89

security and ethics

, 90–91

security governance

, 91

DASH (Dietary Approaches to Stop Hypertension) Diet

, 172, 173, 176–178

Data

anonymized/anonymization

, 45, 47, 48, 55–58, 68, 69, 74, 78, 79

bias in

, 45, 47, 54, 67, 77, 120, 149, 195

Big Data. See Big Data

donors, data sharing risks for

, 75

ethics approach toward

, 56–59

extraction

, 64

minimization

, 48, 49, 59, 75

misuse

, 45, 50–53, 57, 58, 67, 80

ownership

, 13, 66–67, 76, 77, 79

producers, costs and burdens for

, 75

quality

, 49, 67, 68, 76

reuse

, 50–53

science

, 46, 49, 54, 58, 59

security

, 48, 55

storage

, 66–67

use

, 50–53

Data protection

, 4, 5, 45–51, 54–57, 60n8, 67, 68, 80

regulation of

, 47–49

right to

, 54, 59n4

Data Protection Directive 95/46/EC

, 5, 56

Data Protection Working Party

Article

, 29, 48, 49, 59n6, 60n7, 60n8

Data sharing

, 46, 47, 58, 66–67, 71, 72, 74, 76, 77, 80

claims against

, 75

Death computer

, 77

Decision-making capacity

, 7, 147, 149–155, 157, 158, 160

myths of

, 155

Declaration of Helsinki

, 132

Article

, 21, 25

Defense Advanced Research Projects Agency (DARPA)

, 135

Deferential vulnerability

, 156

De-identification. See Anonymized data/anonymization

Deliberate Release Directive

, 104

Department of Health and Human Services

, 16

Devinsky Antiepileptic Drug Study

, 77

Dietary Approaches to Stop Hypertension (DASH). See DASH (Dietary Approaches to Stop Hypertension) Diet

Diet therapy

, 7, 169–181

complexity of

, 178–181

defined

, 170–171

and science

, 175–177

simplicity of

, 178–181

Digital era, ethical challenges in

, 5, 45–60, 70

Big Data

, 49–54

privacy and data protection safeguards

, 47–49

research ethics

, 54–59

Directive 90/220/EEC

, 111n8

Directive 90/385/EEC

, 112n10

Directive 98/44/EC

, 112n12

Directive 2001/18/EC

, 106, 111n1, 111n8, 111n9, 121

Article 2(2)

, 105

Article

, 3, 105

Directive 2001/20/EC

, 59n5, 86, 111n7

Directive 2001/83/EC

, 111n10

Direct-to-consumer (DTC)

products

, 133

testing

, 78

Distributive justice

, 72–74

Do-It-Yourself (DIY) movement

, 121, 133–134, 139

Doudna, Jennifer

, 116, 119

DowDuPont Pioneer

, 117, 125n3

Drug therapy model, for nutrition mismatch

, 187–190

Dual use

, 6, 92, 103, 108, 109, 112n17

definitions of

, 130–132

in neuroscientific and neurotechnological research

, 129–142

do-it-yourself/neurobiohacking

, 133–134

ethical address and guidance

, 139–141

extant treaties and regulations

, 138–139

military/warfare

, 134–138

viability of

, 130

Dual Use Research of Concern (DURC)

, 130–132, 134, 138–140

in neuroscience and neurotechnology

, 132–133

Dynamic consent

, 70

advantages of

, 70–71

Early Breast Cancer Trialists’ Collaborative Group (EBCTCG)

, 189

Ebola hemorrhagic fever. See Ebola virus disease (EVD)

Ebola virus disease (EVD)

, 46

background of

, 35–36

care in resource-limited settings

, 5, 18, 33–42, 36–38

epidemic, ethical considerations associated with

, 42

healthcare workers, fear and stigmatization of

, 38–39

repatriation of international workers, from EVD-affected countries

, 39–41

EFSA Panel on GMOs

, 101, 111n3

Electronic health records

, 64, 66

Elwa Public Hospital

, 40

Enteral nutrition

, 7

Equality

gene editing

, 102, 110

Equity

, 66, 72, 73, 103, 108, 110

promotion, in international research

, 11–29

Ethics

approach toward data

, 56–59

bioethics

, 14, 58, 69, 80, 155

codes, for life sciences

, 4

dumping. See Ethics dumping

governance

, 15

in situ

, 6–8

neuroethics

, 135, 141

research

, 54–59

review. See Ethics review

safety and

, 86–87

security and

, 90–91

Ethics dumping

, 11–18, 23, 26, 27, 28n1, 90

case studies

, 14–18

China, international collaborative genetic research project in

, 16–17

India, cervical cancer screening in

, 15–16

In life sciences

, 4–5

retrospective approval for study in Liberia, seeking

, 18

San people-involved international genomics research

, 17

tools

, 13

Ethics review

, 4, 6, 23, 55, 56, 58, 85

to safety governance in emerging technologies, using

, 89–90

to security governance in emerging technologies, using

, 92–93

EU Law, gene editing governance in

, 103–105

Eurobarometer survey

, 2, 47

European Academies Science Advisory Council (EASAC)

, 101

European Commission (EC)

, 4, 12, 60n8, 60n15, 90, 131

General Data Protection Regulation (GDPR) 2016/679

, 5

Horizon 2020 Ethics Appraisal Procedure

, 86, 89, 92–93, 102, 104

Joint Research Centre

, 101

Scientific Committees

, 101–102

Society Unit

, 28n1

European Commission Report

, 131

European Community

, 132

European Convention of Human Rights

, 47

European Group on Ethics (EGE)

, 103, 104

European Medicines Agency (EMA)

, 106, 132

European Research Area (ERA)

, 5

European Steering Committee

, 6, 123

European Union (EU)

, 2, 3, 6, 12, 47, 60n15, 88, 90

Charter of Fundamental Rights

, 47

gene editing governance

, 99–112

Exploitation prevention, in international research

, 11–29

Exploratory analysis of data

, 64

Facebook

, 46, 51–53

Fairness

, 12, 24–25, 27, 49, 73

corrective

, 24

in exchange

, 24

Global Code of Conduct for Research in Resource-Poor Settings

, 27

Fertility Diet

, 172, 174

Flexitarian Diet

, 172, 173

Food and Agriculture Organization of the United Nations (FAO)

, 7

Food and Drugs Administration (FDA)

, 187

Food and Feed legislation

, 103, 111n9

4Ps principle

, 75

Framework Program 9 (FP9)

, 94–95

Funder Platform

, 18, 19

Fuzziness

, 178–180

Gene drive

, 99, 101, 102, 107–109, 118, 119, 124

Gene editing

, 6, 90, 93, 139

advances of

, 116

developments, marketable products derived from

, 119–120

extended applications of

, 118–119

governance, in EU

, 99–112

ethical challenges to

, 102–104

EU-wide regulatory intervention, need for

, 109–111

gene drive

, 107–109

regulatory questions and legal status of

, 104–107

responsible use of

, 115–125

risks and regulation of

, 121–122

General Data Protection Regulation (GDPR) 2016/679

, 5, 46–49, 53, 56–57

art. 4.11

, 48

art. 7.3

, 50

art. 14.5 (b)

, 49

art. 31 (1)

, 57

art. 35 (1)

, 57

art.

, 89, 49, 55

art. 3.1ii

, 60n17

broad consent

, 48

Gene sequencing

, 78

Genetically modified organisms (GMOs)

, 87, 100, 101, 104–106, 109, 111n1

Genetic data, Bid Data in

, 77–79

Genetic discrimination

, 78, 79, 80n1

Genetic exceptionalism

, 79, 80

Genetic Information Non Discrimination Act (GINA)

, 78

Genetic privacy

, 78, 79

Geneva Protocol

, 139

Genome-wide association studies (GWAS)

, 67

Genomics England

, 65

German Ethics Council

, 103

Germany

dual use in neuroscientific and neurotechnological research

, 141

ethical review to safety governance

, 90

repatriation of international workers

, 40

Global Alliance for Genomics and Health (GA4GH) for

, 65

Global Code of Conduct for Research in Resource-Poor Settings

, 5

Article

, 1, 27

developing

, 26–28

ethics dumping

, 27

Exploitation Risk Table

, 27

Google

, 46

Hague Convention(s)

, 139

Harvard Catalyst Regulatory Foundations

social media research, peculiarities of

, 57

Healthcare, Big Data in

, 63–80

Healthcare Risk Management

, 40

Healthcare workers (HCWs)

, 15, 37

Ebola transmission, fear and stigmatization of

, 33–34, 38–39, 41, 42

Health research

, 15, 46, 58, 63, 64, 66, 76

Big Data in

, 77

High-income countries (HICs)

, 12, 13, 17, 28

High Level Group of the Commission’s Scientific Advice Mechanism (SAM)

, 55, 57, 101

Hinxton Group

, 101

Hippocratic Oath

, 180

Honesty

, 24–26, 74–75

intellectual

, 74

radical

, 74

Horizon Europe

, 12

Horizon 2020 Ethics Appraisal Procedure

, 12, 28, 28n2, 59, 60n21, 86, 89, 92–93, 102, 104

Horizon scanning

, 89

House of Commons Science & Technology Committee

, 51

Human Fertilisation and Embryology Authority (HFEA)

, 117

Human Genome Project

, 77

Human Heredity and Health in Africa (H3Africa)

, 65

Human–machine interactive networks

, 136

Human rights

, 25, 46, 51, 56, 59, 86, 90, 92

Human security

, 91, 92

IBM X-Force Research (2017)

, 53

ICED Index

, 178

India

, 123

cervical cancer screening in

, 15–16

ethics dumping

, 15

Inductive reasoning

, 64

Information disclosure

, 151–152

Informed consent (IC)

, 7, 13, 14, 16, 17, 23, 26, 51, 52, 76, 78–80, 132

autonomy and

, 150–153

basic elements of

, 150–151

clinical dementia research

, 147, 149, 158, 159, 163

decision-making capacity

, 154

peer educators for sex workers

, 21–22

in persons without capacity to consent

, 159–162

advanced consent

, 161

proxy consent

, 160–161

supported decision-making

, 161–162

respect for

, 68–71

vulnerability

, 156, 157

INSERM (the French National Institute for Health and Medical Research) Ethics Committee (IEC)

, 123

In situ ethics

, 6–8

Institute of Electrical and Electronics Engineers (IEEE)

Model Process for Addressing Ethical Concerns during System Design

, 58–59

Institute of Medicine

, 71

Institutional Review Boards (IRBs)

, 18, 132, 159

Intellectual honesty

, 74

Intelligence Advanced Research Projects Activity (IARPA)

, 135

Intensified data sourcing

, 64

International Agency for Research on Cancer (IARC)

, 16

International Association of Gerontology and Geriatrics (IAGG)

, 148

International Atomic Energy Agency (IAEA)

, 94, 95

International Declaration on Human Genetic Data (IDHGD)

, 79

International Ebola Response Team

, 38

International justice

, 28

International research, equity promotion and exploitation prevention in

, 11–29

ethics dumping

, 13–18

Global Code of Conduct for Research in Resource-Poor Settings, developing

, 26–28

TRUST’s global engagement activities

, 18–24

Internet. See Digital era, ethical challenges in

Interventional research

, 71

Intrexon

, 118

Investopedia

, 13

In vitro fertilization (IVF)

, 117

Irish Council for Bioethics

, 55–56

Johnson & Johnson

, 188

Justice

, 24, 28, 66, 102, 103, 110, 159, 162

distributive

, 72–74

gene editing

, 102

social

, 195, 198

Kadoorie Biobank

, 65

Kenyan Research Ethics Committee (REC)

research governance versus research ethics challenges

, 23

TRUST’s global engagement activities, perspective of

, 18–24

Ketogenic diet

, 175, 176

Lagos Mainland Hospital, Yaba

, 39

Legal/regulatory compliance approach

, 87

Liberia

Ebola virus disease

, 33–36, 40

retrospective approval for ethics dumping study, seeking

, 18

Life sciences

, 3–8, 130

Big Data in

, 5, 63–80

ethics codes for

, 4

ethics dumping. See Ethics dumping

research production process in

, 1–2

Linguistic variables

, 169, 178, 179

Lisbon Treaty

, 139

Low- and middle-income countries (LMICs)

, 12, 13, 23, 27, 28, 28n9

Malnutrition problems

, 7

Mayo Clinic Diet

, 172, 173

McDougall Program

, 194

Médecins Sans Frontières (MSF)

, 36

Medical practice

, 7, 132, 185–198

Medical research

, 24, 25

ethical challenges in digital era

, 5, 45–60

Medical Research Council (MRC)

, 3

Medical vulnerability

, 156

Mediterranean diet

, 172–173

Military/warfare dual-use applications, of neuroscientific and neurotechnological research

, 134–138

direct weapinization

, 137–138

human–machine interactive networks

, 136

neural systems modeling

, 136

performance optimization

, 136–137

resiliene in combat and military support personnel

, 136–137

Mind control

, 138

MIND Diet

, 172, 173

Mind reading

, 138

Misuse of data

, 50–53, 57, 58

Model Process for Addressing Ethical Concerns during System Design

, 58–59

Mojica, Francisco Martínez

, 115

Morris, Martha Clare

, 173

Mortality rate, of EVD epidemics

, 37

National Academy of Medicine

, 111n5

National Academy of Sciences (NAS)

, 100, 111n5, 197

National Action Plan on Breast Cancer (NAPBC)

Working Group

, 79

National Institutes of Health (NIH, USA)

, 16, 55, 171, 179, 186

Office of Science Policy (OSP)

, 130–131

National Research Council of the United States Academy of Sciences (NRC)

, 134, 135

National security

, 90–92, 131, 135, 140

Netherlands, the

ethical review to security governance

, 93

ethical review to safety governance

, 90

gene editing

, 106, 121

repatriation of international workers

, 39, 40–41

Neural systems modeling

, 136

Neurobiohacking

, 133–134, 140

Neurohacking

, 6

Neuroscientific research, dual use in

, 129–142

military/warfare. See Military/warfare dual-use applications, of neuroscientific and neurotechnological research

Neurotechnological research, dual use in

, 129–142

military/warfare. See Military/warfare dual-use applications, of neuroscientific and neurotechnological research

Neurotechnologies Industry Report

, 134

New Breeding Techniques (NBT)

, 101, 110, 121

New Zealand

“Predator-free 2050” plan

, 119

War on Rats

, 125n7

Next-generation sequencing technologies

, 67, 78

Niakan, Kathy

, 117

Non-discrimination

, 47, 56, 57, 59, 110

Non-Human Primates (NHP)

, 3

Non-invasive brain stimulation (NIBS)

, 131

Non-maleficence

, 24, 102, 130

Nuffield Council on Bioethics

, 103

Nuffield Council Report

, 134

Nutrition mismatch, medical practice for

, 185–198

drug therapy model

, 187–190

nutrition therapy model

, 190–195

public intervention model

, 195–198

Nutrition therapy model

, 190–195

Occupational Safety and Health Assessment (OSHA)

, 87, 89

Office of Science Policy (OSP)

, 130–131

Off-label use

, 131, 132–133

OkCupid

, 51

Online recruitment

, 45, 53, 54

Open communication

, 26

Open data

, 45, 52, 60n12

Open Data Institute

, 60n12

Organization for Economic Co-operation and Development (OECD)

, 47, 67, 188

Ornish Diet

, 172, 174

Partners for Health and Development in Africa (PHDA)

, 18

Sex Workers Outreach Programme

, 21

Personalized medicine

, 190

Peto, Sir Richard

, 189

Pew Charitable Trusts

, 188

PlantPure

, 197

Population biobanks

, 67

Porteus, Matt

, 120

Precautionary Principle

, 88–89, 90, 100, 122

Precision medicine

, 65, 68, 190

Precision Medicine Initiative

, 65

President’s Commission on Bioethics Report

, 79

Principles of Humane Experimental Technique, The (Russell and Burch)

, 3

Pritikin Center

, 194

Privacy

, 2, 5, 45, 47–57, 59, 64, 66–69, 71, 75, 76, 78–80, 110, 149, 158

genetic

, 78

losses

, 72

right to

, 56

Proceduralism

, 110

Productivity output

, 1

Proxy consent

, 160–161

Psychological operations (PSYOPS)

, 137

Public data

, 47, 51–52, 57–59

Public health, Big Data in

, 76–77

Public health-oriented ethics

, 69

Public intervention model, for nutrition mismatch

, 195–198

Radical honesty

, 74

Reciprocity

, 66, 73, 74

Reductionism

, 194, 195

Regulation on Medical Devices

, 103

Repatriation of international workers, from EVD-affected countries

, 39–41

Research and development (R&D)

, 2, 187–188

Research and innovation (R&I)

, 2

Research ethics, in digital era

, 54–59

Research Ethics Committees (REC)

, 58, 89, 90, 93, 132, 159

Research integrity

, 2, 26, 75

Research production process, in life sciences

, 1–2

Resilience

, 74, 75, 136–137

Resource-limited countries, EVD care in

, 36–38

Respect for autonomy

, 149

Respect for informed consent

, 68–71

Respect for persons

, 68–71, 150, 162

Respect of private and family life

, 47

Responsible Research and Innovation (RRI)

, 86, 94

Restoring Active Memory (RAM)

, 135

Reuse of data

, 50–53

Right to data protection

, 59n4

Right to freedom of arts and sciences

, 47

Right to human dignity

, 47

Right to privacy, r6

Risk assessment

, 87, 89, 101, 102, 107–109, 141

Risk of harm

, 68, 153, 157

Riyadh Intensive Care Program Mortality Prediction Algorithm

, 77

Robustness

, 74, 75, 118

Royal Society Working Group on Neuroscience

, 111n5, 141

Safety, and ethics

, 86–87

Safety culture, defined

, 94

Safety governance

, 87–89, 93

in emerging technologies, ethics review to

, 89–90

San Code of Research Ethics

, 21, 24

San Diego-based biotech Human Longevity

, 65

Sanger Institute

, 65

San, the

, 18

people, international genomics research using

, 17

Research and Media Contract

, 21

sex workers, peer educators for

, 19, 21–22

Scientific Committee on Consumer Safety (SCCS)

, 102, 111n4

Scientific Committee on Emerging and Newly Identified Health Risks (SCENIHR)

, 102, 111n4

Scientific Committee on Health and Environmental Risks (SCHER)

, 102, 111n4

Scientific value

, 67–68

Second International Conference on Nutrition (ICN2)

, 7

Security

, 2, 6, 48, 53, 55, 57, 67, 68, 85–95, 132–134, 139

civil

, 90, 91, 100

communities

, 109

and ethics

, 90–91

human

, 91, 92

national

, 90–92, 131, 135, 140

Security governance

, 85, 86, 90, 91

in emerging technologies, ethics review to

, 92–93

Self-governance

, 87, 88

Sex workers

, 18

in LMICs

, 28n9

in San, peer educators for

, 19, 21–22

Sex Workers Outreach Programme

, 21

Situational vulnerability

, 156

Social vulnerability

, 156

Solidarity

, 39, 66, 73–74, 110

South African San Institute (SASI)

, 18

Spain

repatriation of international workers

, 39, 40

Stakeholder engagement

, 19

SUBNETS

, 135

Supported decision-making

, 158, 161–162

Sustainability

, 25, 72–73, 108

Sweden

gene editing

, 106, 121

Systems medicine

, 63, 65, 76

Therapeutic Lifestyle Changes (TLC) Diet

, 172, 173

3Rs principle

, 3, 29n15

Transcription Activator-Like Effector Nucleases (TALENs)

, 106, 116

Transparency

, 26, 49, 60n7, 66, 71–73, 76, 101, 110, 123

Treaty on the Functioning of the European Union

Article 16.1

, 59n4

True North program

, 194

Trust

, 22, 50, 57, 58, 68, 70–72, 77, 80, 99, 110, 111, 138, 180

TRUST project

, 4, 5, 11–29

care

, 25

fairness

, 24–25

global engagement activities

Kenyan Research Ethics Committee perspective

, 23

meeting of many minds

, 24

sex workers in San, peer educators for

, 19, 21–22

honesty

, 25–26

respect

, 25

timeline of

, 20

Tufts Center for the Study of Drug Development

, 187

Tutu, Desmond

, 17

Twitter

, 46, 51, 76

Uncertainty, in safety governance

, 88

UNESCO

, 103, 104, 110

International Declaration on Human Genetic Data (IDHGD)

, 79

United Kingdom (UK)

Genomics England

, 65

Human Fertilisation and Embryology Authority (HFEA)

, 117

Royal Society

, 111n5

United Nations (UN)

Leadership Council of the Sustainable Development Solutions Network

, 28

Security Council Resolution 1540

, 139

United States (US, USA)

Department of Agriculture (USDA)

, 117, 121, 125n11, 196

Department of Health and Human Services

, 16

drug therapy model

, 188, 189

Federal Bureau of Investigation)

, 134

Food and Drugs Administration (FDA)

, 187

gene editing developments, marketable products derived from

, 119

Genetic Information Non Discrimination Act (GINA)

, 78

National Academy of Medicine

, 111n5

National Academy of Sciences (NAS)

, 100, 111n5, 197

National Institutes of Health (NIH)

, 16, 55, 171, 179, 186

Precision Medicine Initiative

, 65

repatriation of international workers

, 40

safety governance in

, 88

United States’ National Research Council

, 141

Universality

, 66

Usability

, 74

Use of data

, 50–53

US Patent and Trademark Office (USPTO)

, 107

Vegetarian Diet

, 172, 174, 176, 177

Viber

, 46

Visual inspection of the cervix with acetic acid (VIA)

, 15

Volumetrics Diet

, 173

Voluntarism

, 151

Vulnerability

, 7, 21, 28n9, 56, 147, 148, 158, 162

allocational

, 156

cognitive

, 156

deferential

, 156

ethical principle of

, 155–157

medical

, 156

situational

, 156

social

, 156

Weapon, defined

, 137

Web of Science

, 170

Weight Watchers Diet

, 172

Wellcome Trust

, 3, 65

Western medicine

, 186

WhatsApp

, 46, 52

Whole food plant-based diet (WFPB)

, 189, 191–196

Wholism

, 194, 195

Working Group of Indigenous Minorities in Southern Africa (WIMSA)

, 17

World Health Organization (WHO)

, 5, 7, 16, 36, 148

World Wide Web

, 46

Zayner, Josiah

, 121

ZFN-3 technique

, 101, 106

Zhang, Feng

, 119

Zinc Finger Nucleases (ZFNs)

, 116