Ethics and Integrity in Health and Life Sciences Research

Zvonimir Koporc

• Publisher: Emerald Publishing Limited
• Year: 2018
• Print ISBN: 9781787435728
• eBook ISBN: 9781787439184
• Topic: Social Sciences
• Subtopic: Science Research & Methodology
• Index: Social Sciences

Life and health sciences and biomedical studies have developed rapidly over the last few decades raising previously unanticipated ethical concerns and questions. New and emerging technologies require novel approaches, protocols and raised awareness to ensure adequate levels of biosecurity and biosafety as well as the implementation of special measures to prevent their potential misuse or dual use. 

This volume brings together an international collection of prominent ethics experts in health and life sciences, with the aim of providing clear and comprehensive guidelines for the establishment of efficient ethical strategies related to current and emerging biotechnologies and health research. 

Important current topics in research ethics including CRISPR-Cas9 technologies, gene editing, 'big data' in healthcare and life sciences, nutrition in medicine among other topics have found their place in this volume. In addition, the volume discusses the prospects for the implementation of an international unification of ethical standards in life sciences.

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...

Table of contents

• Cover
• Series Editorial Advisory Group
• Title Page
• Copyright Page
• Contents
• Series Preface
• About the Series Editor
• About the Editor
• List of Contributors
• Introduction: Research Production in Life Sciences
• Promoting Equity and Preventing Exploitation in International Research: The Aims, Work, and Output of the TRUST Project
• Ebola Virus Disease: A Lesson in Science and Ethics
• Ethics Challenges in the Digital Era: Focus on Medical Research
• Big Data in Healthcare and the Life Sciences
• Shaping a Culture of Safety and Security in Research on Emerging Technologies: Time to Move beyond “Simple Compliance” Ethics
• Governing Gene Editing in the European Union: Legal and Ethical Considerations
• ARRIGE: Toward a Responsible Use of Genome Editing
• Dual Use in Neuroscientific and Neurotechnological Research: A Need for Ethical Address and Guidance
• Ethical Challenges of Informed Consent, Decision-Making Capacity, and Vulnerability in Clinical Dementia Research
• Diet Therapy Effective Treatment but Also Ethical and Moral Responsibility
• The Mismatch of Nutrition and “Medical Practice”: The Wayward Science of Nutrition in Human Health
• Index