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Ethics in Scientific Research: an Examination of Ethical Principles and Emerging Topics

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Ethics in Scientific Research: an Examination of Ethical Principles and Emerging Topics Ethics in Scientific Research An Examination of Ethical Principles and Emerging Topics Cortney Weinbaum, Eric Landree, Marjory S. Blumenthal, Tepring Piquado, Carlos Ignacio Gutierrez C O R P O R A T I O N For more information on this publication, visit www.rand.org/t/RR2912 Library of Congress Cataloging-in-Publication Data is available for this publication. ISBN: 978-1-9774-0269-1 Published by the RAND Corporation, Santa Monica, Calif. © Copyright 2019 RAND Corporation R® is a registered trademark. Limited Print and Electronic Distribution Rights This document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions. The RAND Corporation is a research organization that develops solutions to public policy challenges to help make communities throughout the world safer and more secure, healthier and more prosperous. RAND is nonprofit, nonpartisan, and committed to the public interest. RAND’s publications do not necessarily reflect the opinions of its research clients and sponsors. Support RAND Make a tax-deductible charitable contribution at www.rand.org/giving/contribute www.rand.org Preface The goal of this project was to provide researchers, government officials, and others who create, modify, and enforce ethics in scientific research around the world with an understanding of how ethics are created, monitored, and enforced across scientific disciplines and across international borders. The research had two motivations: (1) to inform researchers and sponsors who engage in research in emerging scientific disci- plines and who may face new ethical challenges, and (2) to inform research sponsors— including government officials—who wish to encourage ethical research without unin- tentionally encouraging researchers to pursue their research in other jurisdictions. While this report is intended for audiences with scientific expertise, it is also intended to be useful to scientists from various disciplines who have differing exper- tise from other disciplines and for citizen scientists and amateur researchers who lack formal scientific training. Therefore, it should be accessible to informed readers from a variety of backgrounds and experiences. This research was sponsored by the Intelligence Advanced Research Projects Activity (IARPA) and conducted within the Cyber and Intelligence Policy Center of the RAND National Defense Research Institute, a federally funded research and development center (FFRDC) sponsored by the Office of the Secretary of Defense, the Joint Staff, the Unified Combatant Commands, the Navy, the Marine Corps, the defense agencies, and the defense Intelligence Community. All of the data collection and analysis described in this report took place in 2018. For more information on the RAND Cyber and Intelligence Policy Center, see www.rand.org/nsrd/ndri/centers/intel or contact the center director (contact informa- tion is provided on the webpage). iii Contents Preface ................................................................................................. iii Figure, Table, and Boxes ...........................................................................vii Summary ............................................................................................. ix Acknowledgments ..................................................................................xiii Abbreviations ........................................................................................xv CHAPTER ONE Introduction ........................................................................................... 1 Why We Did This Research .......................................................................... 1 Research Methodology ................................................................................ 1 How This Report Could Be Used ................................................................... 2 The Difference Between Ethics and Law ........................................................... 3 CHAPTER TWO Ethical Principles for Scientific Research ........................................................ 5 Duty to Society ......................................................................................... 5 Beneficence ............................................................................................10 Conflict of Interest ...................................................................................15 Informed Consent ....................................................................................19 Integrity ............................................................................................... 22 Nondiscrimination .................................................................................. 23 Nonexploitation ..................................................................................... 26 Privacy and Confidentiality ..........................................................................29 Professional Competence .............................................................................32 Professional Discipline ...............................................................................37 CHAPTER THREE International Landscape of Ethics ...............................................................41 The Seminal Influence of the Declaration of Helsinki .......................................... 42 The Convention on Biological Diversity and Its Derivatives ................................... 43 v vi Ethics in Scientific Research: An Examination of Ethical Principles and Emerging Topics The Precautionary Principle ........................................................................ 44 Regional Differences ..................................................................................45 Ethics “Dumping” ....................................................................................49 International Standards Development ..............................................................51 Concluding Observations ............................................................................51 CHAPTER FOUR Monitoring and Enforcing Ethics ................................................................55 CHAPTER FIVE Emerging Ethics Topics ............................................................................61 Bystander Risk .........................................................................................61 Big Data ................................................................................................63 Open Science ..........................................................................................65 Citizen Science ........................................................................................67 CHAPTER SIX Conclusions ...........................................................................................69 APPENDIX A. Methodology .....................................................................................71 B. Codebook ......................................................................................... 77 C. Interview Informed Consent and Protocol .................................................81 D. List of Interview Participants ..................................................................83 E. Bibliography of Literature .....................................................................85 F. Bibliography of Codes of Conduct ............................................................93 References ............................................................................................95 Figure, Tables, and Boxes Figure A.1. Documents Reviewed by Publication Year ...........................................72 Tables S.1. Ethical Principles for Scientific Research .............................................. x S.2. Categories of Ethical Principles ........................................................ xi 2.1. Ethical Principles for Scientific Research .............................................. 6 2.2. Categories of Ethical Principles ......................................................... 7 2.3. Informed Consent Versus Beneficence and Duty to Society .......................21 2.4. Considerations for Research Methods .................................................35 4.1. Codified Ethics in Hard Law and Soft Law ......................................... 56 A.2. Documents Reviewed, by Discipline ..................................................73 A.3. Literature Review Results ...............................................................74 Boxes 2.1. The Uppsala Code and the Pugwash Tradition ......................................11 2.2. Broad Privacy Policy Affecting Research and Beyond ..............................32 3.1. Convention on Biological Diversity and Its Supplements .......................... 44 3.2. Informed Consent Around the World ................................................ 46 3.3. The European Charter of Fundamental Rights ......................................47 A.1. List of Scientific Disciplines Examined ...............................................72 vii Summary Scientific research
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