SpringerBriefs in Research and Innovation Governance
Editors-in-Chief
Doris Schroeder
Centre for Professional Ethics, University of Central Lancashire, Preston, Lancashire, UK
Konstantinos Iatridis
School of Management, University of Bath, Bath, UK

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Doris Schroeder, Kate Chatfield, Michelle Singh, Roger Chennells and Peter Herissone-Kelly
Equitable Research PartnershipsA Global Code of Conduct to Counter Ethics Dumping
Foreword by Klaus Leisinger
Doris Schroeder
Centre for Professional Ethics, University of Central Lancashire, Preston, Lancashire, UK
Kate Chatfield
Centre for Professional Ethics, University of Central Lancashire, Preston, Lancashire, UK
Michelle Singh
Africa Office, European & Developing Countries Clinical Trials Partnership, Cape Town, South Africa
Roger Chennells
Chennells Albertyn Attorneys, Stellenbosch, South Africa
Peter Herissone-Kelly
School of Humanities and Social Sciences, University of Central Lancashire, Preston, Lancashire, UK
ISSN 2452-0519e-ISSN 2452-0527
SpringerBriefs in Research and Innovation Governance
ISBN 978-3-030-15744-9e-ISBN 978-3-030-15745-6
https://doi.org/10.1007/978-3-030-15745-6
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© The Author(s), under exclusive license to Springer Nature Switzerland AG 2019
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To Reverend Mario Mahongo (1952–2018)

Foreword
In September 2015, after intensive public consultation, the international community went on record with a plan of action for people, planet and prosperity: the 2030 Agenda for Sustainable Development . All country representatives and all stakeholders expressed their determination

to take the bold and transformative steps which are urgently needed to shift the world on to a sustainable and resilient path. As we embark on this collective journey, we pledge that no one will be left behind [emphasis added]. (UN 2015).

To stimulate action, the heads of states and governments defined 17 sustainable development goals and 169 targets to be achieved by 2030. Successes in efforts to end extreme poverty, achieve food security and ensure healthy lives, as well as successes towards all other goals, depend not only on goal-oriented societal reforms and the mobilization of substantial financial and technical assistance, but also on significant technological, biomedical and other innovations.

Ensuring the success of the Agenda 2030 requires massive research and development efforts as well new forms of research co-creation on a level playing field and with a universal professional ethos.

Leaving no one behind does not “only” include reducing income and wealth inequalities , and affirmative action in support of better opportunities for self-determined living within and among countries. It also implies reaching those most at risk from poverty and its impacts. This again necessitates research focused on the needs of the poor in a way that does not infringe their human rights.

Research and innovation can only be sustainably successful when based on societal trust. The precondition for societal trust and public acceptance is the perception that work is done with integrity and based on fundamental values shared by the global community. Trust depends not only on research work being compliant with laws and regulations, but also, more than ever, on its legitimacy.

Such legitimacy can be achieved through inclusion and, importantly, the co-design of solutions with vulnerable populations. Leaving no one behind also means leaving no one behind throughout the research process, aiming for research with , not about , vulnerable populations.

The results of the TRUST Project, whose Global Code of Conduct for Research in Resource-Poor Settings (GCC) this book celebrates, contribute to realizing the European Union’s ambition of a more inclusive, equal and sustainable global society – a profound expectation of people all over the world.

The fact that the GCC now exists and has been welcomed by the European Commission as a precondition for its research grants is only a beginning.

My hope is that enlightened stakeholders in public institutions, foundations and the private sector will now start a discourse and apply moral imagination to the concrete consequences of the GCC. This relates to the processes and content of their research endeavours as well as the selection criteria for hiring, promoting and remunerating the research workforce.

Research excellence is no longer only defined by playing by the rules and being “successful”. The results of discourses about the operationalization of the TRUST values of fairness, respect, care and honesty are the new benchmark for excellence.

Professor Klaus Leisinger , a social scientist and economist, is the President of the Global Values Alliance in Basel, Switzerland. He served as an adviser on corporate responsibility to UN Secretaries-General Kofi Annan and Ban Ki-moon. He is currently a member of the Leadership Council of the UN Sustainable Development Solutions Network. In 2011, he was awarded the first ever Outstanding Contribution to Global Health Award by South-South Awards for his successful work on eradicating leprosy.

Reference

Klaus Leisinger
Basel, Switzerland
Acknowledgements

Writing a book is child’s play compared to writing a new ethics code – a monumental task achieved by the 56 individuals named in the Appendix as the proud authors of the Global Code of Conduct for Research in Resource-Poor Settings (GCC). Thus, by the time we started writing this book, the bulk of the work had already been done.

The task of conveying the collective pride of these 56 authors to the world was entrusted to the Reverend Mario Mahongo, an honoured San Leader born in Angola. He was due to travel from the Kalahari Desert to Stockholm, Sweden, in May 2018 to launch the GCC. Just one day before flying to Europe, he died in a car crash. This book is dedicated to Mario. His last recorded statement about research ethics was: “I don’t want researchers to see us as museums who cannot speak for themselves and who don’t expect something in return” (Chapter 7 ). This statement expresses the fairness element of the GCC beautifully.

The GCC was produced by the TRUST project, an initiative funded by the European Commission (EC) Horizon 2020 Programme, agreement number 664771.

Dorian Karatzas, Roberta Monachello, Dr Louiza Kalokairinou, Edyta Sikorska, Yves Dumont and Wolfgang Bode formed the magnificent EC team supporting the TRUST project.

Thanks to Dorian for ensuring that the GCC was brought to the attention of the highest level of decision-making on ethics in the EC, for suggesting TRUST as a research and development success story of Horizon 2020 (EC 2018) and for having the GCC checked by the EC legal department in time for our event at the European Parliament in June 2018. Without Dorian’s efforts, the code would not have the standing it has now, as a mandatory reference document for EC framework programmes.

Thanks to Roberta for believing in our work and for being a most enthusiastic, supportive and interested project officer, despite several amendments. Thanks to Wolfgang for facilitating one of those amendments very professionally and in record time during a summer break.

Thanks to Louiza for providing insightful funder input during the GCC development phase. Thanks to Edyta for organizing a very stimulating training event for EC staff on the GCC. Thanks to Yves Dumont for inventing the term “ethics dumping” in 2013.

Thanks to Stelios Kouloglou, MEP, and Dr Mihalis Kritikos for giving us the opportunity to present the GCC at a European Parliament event.

Thanks to Dr Wolfgang Burtscher, the EC’s deputy director-general for Research and Innovation, for announcing in person at the European Parliament event that the GCC would henceforth be a mandatory reference document for EC framework programmes.

Thanks to the University of Cape Town for being the first university to adopt the GCC in April 2019. This is owed to Prof. Rachel Wynberg’s long-term commitment to equitable research partnerships and the protection of vulnerable populations in research.

Thanks to Joyce Adhiambo Odhiambo and her colleagues in Nairobi for preparing the excellent speech on the four values of the GCC – fairness, respect, care and honesty – that she presented at the European Parliament (TRUST 2018).

Thanks to Leana Snyders, the director of the South African San Council, for taking the place of Reverend Mario Mahongo at the Stockholm GCC launch event and for doing so brilliantly, despite the shock of his tragic death. Thanks also for her speech at the European Parliament event.

Thanks to Professor Jeffrey Sachs, Dr Leonardo Simão, Dr Mahnaz Vahedi and Vivienne Parry MBE for joining the TRUST team at the European Parliament event.

Thanks to Fritz Schmuhl, the senior editor at Springer, who is still the best book editor I know. This is my sixth Springer book with him, which says it all. Thanks also to George Solomon, the project co-ordinator for this book, for dealing swiftly and efficiently with all questions and for smoothing out any complications in the book production process. Finally, thanks to Ramkumar Rathika for expertly guiding the e-proofing process.

This is also the sixth book for which Paul Wise in South Africa has been the professional copy-editor. Copy-editing sounds like checking that references are in the right format, but that’s comparing a mouse to a lion. Paul does a lion’s work; he even found a factual mistake in an author biography – written by the author. Thanks, Paul! I hope you’re around for the seventh book.

Thanks to Professor Michael Parker, the director of Ethox at Oxford University, for giving a team of us (Joshua Kimani, Leana Snyders, Joyce Adhiambo Odhiambo and me) the floor in his distinguished institute to introduce the GCC.

Thanks to David Coles, Olivia Biernacki, Francesca Cavallaro, Julie Cook, Dieynaba N’Diaye, Francois Bompart, Jacintha Toohey, Rachel Wynberg, Jaci van Niekirk and Myriam Ait Aissa for their contributions to the work, which is summarized in Chapter 8 .

Thanks to Julie Cook for brilliant comments on earlier versions of the manuscript, and also to two anonymous peer reviewers for their helpful comments on the book plans.

Thanks to Dr Francesca Cavallaro for creating the educational and fun GCC website. 1

Thanks to Amy Azra Dean for producing film clips for the GCC website.

Thanks to Kelly Laas, host of the world’s largest collection of ethics codes, 2 who has a good answer to any question on ethics codes.

Thanks to Julia Dammann for productive Twitter activities on the GCC.

Thanks to Dr Michael Makanga and the European & Developing Countries Clinical Trials Partnership for carrying the costs of the Portuguese translations of the GCC and the San Code of Research Ethics. Thanks to Dr Alexis Holden at the University of Central Lancashire (UCLan), who approved the funding of six further translations.

Thanks to Professor Olga Kubar, Mr Albert Schröder, Dr François Hirsch, Dr Veronique Delpire, Dr Yandong Zhao, Ms Xu Goebel, Dr Shunzo Majima, Dr Dafna Feinholz, Dr Nandini Kumar, Dr Vasantha Muthuswamy, Dr Swapnil S Agarwal, Dr Prabhat K Choudhary, Dr Roli Mathur and Dr Amitabh Dutta for their contributions to the Russian, German, French, Mandarin, Japanese, Spanish and Hindi translations.

Thanks to Robin Richardson, head of the School of Health Sciences at UCLan, for giving Kate Chatfield and me room to do as much work on the GCC as needed, despite other pressing engagements.

Thanks to Denise Bowers, the head of Payroll at UCLan, for supporting an international team at the Centre for Professional Ethics, despite Brexit.

Thanks to Ethan Farrell at UCLan for multiskilled professional administrative support.

Thanks to Geoff Pennington of CD Marketing, Blackburn, for designing the effective GCC brochure and a magnificent document on the origins and history of the San Code of Research Ethics. 3 And thanks too to Clare Danz of the same company for lightning-fast communication and complete reliability.

Thanks to my four co-authors, Dr Kate Chatfield, Dr Michelle Singh, Dr Roger Chennells and Dr Peter Herissone-Kelly. It was a pleasure to work with you.

Last but not least, thanks to Professor Klaus Leisinger for writing the Foreword to this book despite his extremely busy schedule, and for giving the TRUST project and the GCC unprecedented limelight in powerful policy settings.

  • Doris Schroeder

  • February 2019

References

Abbreviations

ACF

Action contre la Faim

CBD

UN Convention on Biological Diversity

COHRED

Council on Health Research for Development

EC

European Commission (EC)

EDCTP

European and Developing Countries Clinical Trials Partnership

EFPIA

European Federation of Pharmaceutical Industries and Associations

FERCI

Forum for Ethics Review Committees in India

GCC

Global Code of Conduct for Research in Resource-Poor Settings

GVA

Global Values Alliance

HIC

high-income country

Inserm

Institut national de la santé et de la recherche médicale

IPR

intellectual property rights

LMICs

low- and middle-income countries

NGO

nongovernmental organization

PHDA

Partners for Health and Development in Africa

REC

research ethics committee

SASC

South African San Council

SASI

South African San Institute

SWOP

Sex Workers Outreach Programme

UNESCO

United Nations Educational, Scientific and Cultural Organization

WIMSA

Working Group of Indigenous Minorities in Southern Africa

Contents

1 Ethics Dumping and the Need for a Global Code of Conduct 1
References 3
2 A Value-Based Global Code of Conduct to Counter Ethics Dumping 5
Fairness 6
Respect 7
Care 8
Honesty 10
3 The Four Values Framework:​ Fairness, Respect, Care and Honesty 13
Introduction 13
The Meaning of “Value” 14
What Can Guide Moral Action?​ 16
Values and Their Motivating Power 18
From Values to Action 19
The Four Values 20
Fairness 20
Respect 22
Care 22
Honesty 23
Conclusion 24
References 25
4 Respect and a Global Code of Conduct? 27
Introduction 27
The Four Values and Moral Relativism 30
A More Moderate Relativism 31
Grounding the Global Applicability Thesis of the GCC in a Common Morality 32
Conclusion 35
References 36
5 Exploitation Risks in Collaborative International Research 37
The Nature of Exploitation 38
Our Method 39
Our Findings 40
Fairness 41
Respect 43
Care 44
Honesty 46
Conclusion 48
Serious Poverty 48
Extreme Differentials in Power 48
Past History of Colonialism 49
References 49
6 How the Global Code of Conduct Was Built 51
Introduction 51
Meaningful Consultation with Diverse Stakeholders 53
Broad Consultation 53
The Case Study Competition 56
Meetings and Platforms:​ Reaching the Right Delegates 57
External Engagement with Research Policymakers 60
External Engagement with Research Funders 60
External Engagement with Researchers 61
Engagement with Research Participants and Research Communities 63
Advocate Voices for Animals 64
External Engagement with Research Ethics Committees 65
Analysis of Existing Guidelines 66
Drafting Process 67
Early Adopters and Conclusion 70
References 70
7 The San Code of Research Ethics 73
Introduction 73
The San of Southern Africa 74
Institution Building and Supportive NGOs 75
WIMSA:​ The Catalyst Institution 76
South African San Institute and South African San Council 77
Leaders of Integrity 78
Legal Support 79
Supportive Research Collaborations 80
Drafting the San Code of Research Ethics 81
The San Code of Research Ethics 83
Respect 83
Honesty 83
Justice and Fairness 84
Care 85
Process 85
Conclusion 85
References 87
8 Good Practice to Counter Ethics Dumping 89
Introduction 89
The Values as an Ethical Foundation 90
Ethical Engagement with Communities 91
Setting the Research Aims and/​or Developing the Research Question 93
Designing the Study 94
Implementing the Study 94
The Results Phase 96
Evaluating the Study 96
Developing an Accessible Complaints Procedure 97
Factors Affecting Accessibility 99
The Scope of a Complaints Procedure 101
A Values-Based Approach to Developing a Complaints Procedure 102
A Fair Research Contracting Tool 103
Conclusion 105
References 106
9 Towards Equitable Research Partnership 109
References 112
Appendix 115
Index 119

About the Authors

Doris Schroeder

is director of the Centre for Professional Ethics at the University of Central Lancashire, and professor of moral philosophy at the School of Law, UCLan Cyprus. She is the lead author of the Global Code of Conduct for Research in Resource-Poor Settings.

 
Kate Chatfield

is deputy director of the Centre for Professional Ethics, University of Central Lancashire, UK. She is a social science researcher and ethicist specializing in global justice, research ethics, animal ethics and responsible innovation.

 
Michelle Singh

is a project officer at the European & Developing Countries Clinical Trials Partnership in Cape Town, South Africa. She holds a medical PhD and previously managed maternal and child health research studies and clinical trials at the South African Medical Research Council.

 
Roger Chennells

works as legal adviser to the South African San Institute and is a founder-partner in the human rights law practice Chennells Albertyn, Stellenbosch, established in 1981. Specializing in labour, land, environmental and human rights law, he has also worked for Aboriginal people in Australia .

 
Peter Herissone-Kelly

is senior lecturer in philosophy, University of Central Lancashire, UK. He is a specialist in Kantian ethics as well as bioethics, analytic philosophy of language and metaethics.