Prelims

Series Page

ADVANCES IN RESEARCH ETHICS AND INTEGRITY

Series Editor: Dr Ron Iphofen, FAcSS, Independent Consultant, France

Recent volumes:

• Volume 1: Finding Common Ground: Consensus in Research Ethics Across the Social Sciences, Edited by Ron Iphofen

• Volume 2: The Ethics of Online Research, Edited by Kandy Woodfield

• Volume 3: Virtue Ethics in the Conduct and Governance of Social Science Research, Edited by Nathan Emmerich

• Volume 4: Ethics and Integrity in Health and Life Sciences Research, Edited by Zvonimir Koporc

• Volume 5: Ethics and Integrity in Visual Research Methods, Edited by Savannah Dodd

• Volume 6: Indigenous Research Ethics, Edited by Lily George, Juan Tauri and Lindsey Te Ata o Tu MacDonald

Editorial Advisory Group

• Professor Robert Dingwall, FAcSS, Dingwayy Enterprises Ltd and Nottingham Trent University, UK

• Dr Nathan Emmerich, Institute of Ethics, Dublin City University and Queens University Belfast, UK

• Professor Mark Israel, University of Western Australia, Australia

• Dr Janet Lewis, AcSS, Former Research Director, Joseph Rowntree Foundation, UK

• Professor John Oates, FAcSS, Open University, UK

• Associate Professor Martin Tolich, University of Otago, New Zealand

Title Page

ADVANCES IN RESEARCH ETHICS AND INTEGRITY, VOLUME 7

ETHICS AND INTEGRITY IN RESEARCH WITH CHILDREN AND YOUNG PEOPLE

EDITED BY

GRACE SPENCER

Anglia Ruskin University, UK

United Kingdom – North America – Japan India – Malaysia – China

Copyright Page

Emerald Publishing Limited

Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2022

Copyright © 2022 Emerald Publishing Limited

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British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-80043-401-1 (Print)

ISBN: 978-1-80043-400-4 (Online)

ISBN: 978-1-80043-402-8 (Epub)

ISSN: 2398-6018 (Series)

Dedication Page

For Harry, Emily and Oliver, and all the incredible children and young people that have inspired the chapters in this volume and my broader programme of work.

Contents

List of Tables and Figures

List of Contributors

Fitri Arlinkasari, Psy is a psychologist and Lecturer in the Faculty of Psychology, YARSI University, Indonesia. She received her doctoral degree in Architecture and Built Environment from Queensland University of Technology. Her current research includes linking children’s experiences of neighbourhood spaces and childhood social capital, gendered playground, education and sustainable behaviour among young people, and ethical practice in research with children.

Abneet Atwal is a PhD student in the Child and Youth Studies programme at Brock University, Ontario, Canada. She is the Project Coordinator for the Inclusive Early Childhood Service System project at Ryerson University, Toronto. Her PhD focusses on the intersection of childhood disability with citizenship, race, culture and language.

Ruth Barley is a Reader of Sociology in the College of Social Sciences and Arts at Sheffield Hallam University, UK. Her research interests lie within the area of cultural diversity, identity and inclusion and more specifically how children conceptualise and operationalise identity and the impact this has on their development.

Ayuko Berchtold-Sedooka is a Senior Research Associate in the Center for Children’s Rights Studies, University of Geneva, and at the University of Teacher Education Valais. Her research and teaching activities focus on interdisciplinary and intercultural dialogue between educational sciences and children’s rights in Asia and Europe.

Sarah Burch is the Director of Research in the Faculty of Health, Education, Medicine and Social Care at Anglia Ruskin University. She is an experienced academic and research manager and has worked in a range of public sector organisations. Her research addresses wellbeing and need across the life course.

Sara Camponovo is a PhD candidate in Educational Science at the University of Geneva. She is working on the project, ‘Exploring the way to and from school with children: an interdisciplinary approach of children’s experiences of the third place’. Her participatory research focusses on children’s experiences of school journeys.

Penelope Carroll is a Public Health Researcher at the SHORE and Whariki Research Center, Massey University. Her research interests include social policy, housing, neighbourhoods and health and children’s rights to participate in the design of child-friendly cities. She has a strong commitment to social sustainability, equity and social justice.

Debra Flanders Cushing, is an Associate Professor of Landscape Architecture in the School of Architecture and Built Environment, Faculty of Engineering at the Queensland University of Technology, Australia. Her research focuses on creating intergenerational community places, including neighbourhood parks and other urban spaces, that promote health and wellbeing for all ages.

Ernestina Dankyi is a Research Fellow at the Center for Social Policy Studies, University of Ghana. Her research focusses largely on the rights and welfare of diverse groups of child and young migrants (internal, international, forced and voluntary).

Frédéric Darbellay is an Associate Professor at the University of Geneva (Valais Campus) and Head of the Inter- and Transdisciplinary Unit at the Center for Children’s Rights Studies. His research focusses on the study of interdisciplinarity as a creative process of knowledge production between and beyond disciplines.

Emma Davidson is a Lecturer and Leverhulme Early Career Fellow at the University of Edinburgh. Her work combines childhood, youth and community studies, and she has expertise in collaborative ethnography and participatory research methods.

Justyna Deszcz-Tryhubczak is an Associate Professor of Literature and Director of the Center for Young People’s Literature and Culture at the Institute of English Studies, University of Wrocław, Poland. She is the author of Yes to Solidarity, No to Oppression: Radical Fantasy Fiction and Its Young Readers (2016). Her research focusses on speculative fiction, utopianism and participatory and child-led approaches.

Victoria Egli, PhD, is a Researcher at the School of Nursing, University of Auckland. Her research focusses on neighbourhood built environments to support children’s health and wellbeing. She is interested in how where children live, play and go to school, impacts on their health and wellbeing.

Sofie Henze-Pedersen is a Researcher at The Danish Center for Social Science Research (VIVE), Denmark. Her research interests include childhood and family studies. Her PhD project at the Department of Sociology, University of Copenhagen, explored everyday family life with children who have experienced violence in the family context.

Philip D. Jaffé, by training a Clinical Psychologist, is a Full Professor at the Center for Children’s Rights Studies, University of Geneva. He is a member of the United Nations Committee on the Rights of the Child. His main interests lie in child participation, child-friendly justice and protection.

Marketta Kytta is a Professor of Land Use Planning in the Department of Built Environment, Aalto University, Finland. Her research focusses on environments that promote wellbeing and health, active living, child-friendly environments, sustainability and new methods for public participation. Her innovation “softGIS” is an example of public participation GIS methodology.

Stephen O. Kwankye is an Associate Professor of Population Studies at the Regional Institute for Population Studies, University of Ghana, Legon. He has wide range of research publications with research interests in adolescent sexual and reproductive health, independent child migration, population-development interrelationships, population dynamics and demographic data collection.

Mateusz Marecki, MA, is a Lecturer at Jilin University in China. He has published over 20 articles, reviews and academic translations, and has co-edited a book on war and words. He has been actively involved in organising and running a number of workshops and outreach projects for young readers.

Suzanne Mavoa’s research at the School of Population and Global Health at the University of Melbourne focusses on novel and improved geospatial methods in health research, and understanding the relationship between the natural and built environments and health, with a particular focus on children and young people.

Christina McMellon is a Senior Research Fellow for Moray House School of Education and Sport at University of Edinburgh. With a practice background in Community Education, her academic work focusses on participatory research with young people.

Evonne Miller is a Professor of Design Psychology and Director of the Queensland University of Technology Design Lab in the School of Design, Creative Industries at Queensland University of Technology, Brisbane, Australia. Her research focusses on how to design environments – built, technical, socio-cultural and natural – that engage and support all users.

Zoé Moody is a Professor at the University of Teacher Education Valais and Senior Research Associate at the Inter- and Transdisciplinarity Unit, Center for Children’s Rights Studies, University of Geneva. Her research and teaching activities focus on children’s rights to, in and through, education and on children’s participation in research.

Abiodun Blessing Osaiyuwu is a qualified social worker who has practised in the UK and Nigeria. She has worked in different departments, including the Student Affairs Division, at the University of Benin, Nigeria. She is currently working with children and young persons with challenging behaviour within a secure environment.

Gillian Parekh is an Associate Professor and Canada Research Chair in Disability Studies and Education within the Faculty of Education at York University, Toronto, Canada. Her work explores how schools construct and respond to disability, as well as how students are organised across programmes and systems.

Jayne Price is a Lecturer in Criminology within the Department of Social and Political Science at the University of Chester, England. Her research interests include prisons, transitions, youth and young adulthood and youth justice. She also volunteers locally within a youth offending service and is a trustee at a YMCA.

Abigail Shabtay is an Assistant Professor in the Children, Childhood and Youth programme at York University in Toronto, Canada. An award-winning researcher and educator, her work focusses on children’s rights, youth theatre, child-centred research methods, youth activism, digital performance and drama-based participatory action research.

Melody Smith is an Associate Professor in the School of Nursing, University of Auckland. Her research aspires to inform the development of neighbourhoods where people move around safely by walking and cycling, and where social and physical wellbeing are prioritised. Her work involves integrating objective behavioural measurements with person-centred methods.

Grace Spencer is a Ruskin Fellow at Anglia Ruskin University. Her work focusses on young people’s health and wellbeing. She has widely published on concepts of risk and empowerment as they relate to young people; including the ethical and methodological complexities of conducting research with children and young people.

Jill Thompson is a Senior Lecturer in the Health Sciences School, University of Sheffield. She has a background in qualitative and participatory health research. She is committed to the active involvement of children in influencing contexts of relevance to their health and wellbeing.

Kathryn Underwood is a Professor in the School of Early Childhood Studies, Ryerson University, Toronto, Canada. Her research focusses on care, childhood and disability and institutions, with growing emphasis on the divide between public and private relationships that work to organise children and families. She is the Director of the Inclusive Early Childhood Service System project.

Chikezie E. Uzuegbunam is a Postdoctoral Research Fellow at HUMA – Institute for Humanities in Africa, University of Cape Town, South Africa. His research interests focus on digital media culture, youth studies, cultural studies and political/health communication in Africa. He was a 2019 fellow of Oxford Media Policy Institute, Oxford University.

Gunjan Wadhwa is an Economic and Social Research Council (ESRC) Postdoctoral Fellow at the Department of Education, Brunel University London, leading a research project on ‘Rural youth identities in India’. Her research interests involve sociology of education and international development, with a focus on identities, youth, gender and citizenship in post-colonial Global South contexts.

Karen Witten is a Professor of Public Health at the SHORE and Whariki Research Center, Massey University. Her research is focussed on the way streets, neighbourhoods and cities are designed and used to promote or inhibit health and wellbeing.

Series/Volume Editors’ Biographies

Volume Editor, Ethics and Integrity in Research with Children and Young People

Grace Spencer is a Ruskin Fellow at the Faculty of Health, Education, Medicine and Social Care, Anglia Ruskin University, Cambridge, UK. Her research focusses on children and young people’s health and their health-related practices with reference to concepts of risk, agency and empowerment theory in health promotion. She is the author of Empowerment, Health Promotion and Young People: A Critical Approach. She is recognised globally for her expertise in qualitative research methods and the ethics of childhood and youth-centred research, and has published widely on the ethical aspects of research with children and young people.

Series Editor, Advances in Research Ethics in Integrity

Ron Iphofen, FAcSS, is Executive Editor for this Emerald book series. He is an Independent Consultant, a Fellow of the UK Academy of Social Sciences, the Higher Education Academy and the Royal Society of Medicine. Since retiring as Director of Postgraduate Studies in the School of Healthcare Sciences, Bangor University, his major activity has been as an adviser to the European Commission (EC) and its executive agencies, and the European Research Council (ERC) on both the seventh Framework Programme (FP7) and Horizon 2020. His consultancy work has covered a range of research agencies (in government and independent) across Europe. He was vice chair of the UK Social Research Association (SRA), updated their ethics guidelines and now convenes the SRA’s Research Ethics Forum. He has acted as scientific and ethics advisor for several EC Projects and has advised the UK Research Integrity Office, the National Disability Authority of the Irish Ministry of Justice, the UK Parliamentary Office of Science and Technology, the Scottish Executive, the Food Standards Agency, the Ministry of Justice, Agence Nationale de la Recherche (the French research funding agency), the Social Science Research Council Canada amongst many others. He was founding Executive Editor of the Emerald gerontology journal Quality in Ageing and Older Adults, published Ethical Decision Making in Social Research: A Practical Guide (Palgrave Macmillan, 2009/2011), coedited with Martin Tolich The SAGE Handbook of Qualitative Research Ethics (2018) and edited the Handbook of Research Ethics and Scientific Integrity for Springer Nature (2020). He is currently leading a European Commission-funded project (PRO-RES) that aims at promoting ethics and integrity in all non-medical research.

Series Preface

By

Ron Iphofen (Series Editor)

This book series, Advances in Research Ethics and Integrity, grew out of foundational work with a group of Fellows of the UK Academy of Social Sciences (AcSS) who were all concerned to ensure that lessons learned from previous work were built upon and improved in the interests of the production of robust research practices of high quality. Duplication or unnecessary repetitions of earlier research and ignorance of existing work were seen as hindrances to research progress. Individual researchers, research professions and society all suffer in having to pay the costs in time, energy and money of delayed progress and superfluous repetitions. There is little excuse for failure to build on existing knowledge and practice given modern search technologies unless selfish ‘domain protectionism’ leads researchers to ignore existing work and seek credit for innovations already accomplished. Our concern was to aid well-motivated researchers to quickly discover existing progress made in ethical research in terms of topic, method and/or discipline and to move on with their own work more productively and to discover the best, most effective means to disseminate their own findings so that other researchers could, in turn, contribute to research progress.

It is true that there is a plethora of ethics codes and guidelines with researchers left to themselves to judge those more appropriate to their proposed activity. The same questions are repeatedly asked on discussion forums about how to proceed when similar longstanding problems in the field are being confronted afresh by novice researchers. Researchers and members of ethics review boards alike are faced with selecting the most appropriate codes or guidelines for their current purpose, eliding differences and similarities in a labyrinth of uncertainty. It is no wonder that novice researchers can despair in their search for guidance and experienced researchers may be tempted by the ‘checklist mentality’ that appears to characterise a meeting of formalised ethics requirements and permit their conscience-free pursuit of a cherished programme of research.

If risks of harm to the public and to researchers are to be kept to a minimum and if professional standards in the conduct of scientific research are to be maintained, the more that fundamental understandings of ethical behaviour in research are shared the better. If progress is made in one sphere everyone gains from it being generally acknowledged and understood. If foundational work is conducted everyone gains from being able to build on and develop further that work.

Nor can it be assumed that formal ethics review committees are able to resolve the dilemmas or meet the challenges involved. Enough has been written about such review bodies to make their limitations clear. Crucially, they cannot follow researchers into the field to monitor their every action; they cannot anticipate all of the emergent ethical dilemmas nor, even, follow through to the publication of findings. There is no adequate penalty for neglect through incompetence, nor worse, for conscious omissions of evidence. We have to rely upon the virtues of the individual researcher alongside the skills of journal reviewers and funding agency evaluators. We need constantly to monitor scientific integrity at the corporate and at the individual level. These are issues of quality as well as morality.

Within the research ethics field new problems, issues and concerns and new ways of collecting data continue to emerge regularly. This should not be surprising as social, economic and technological change necessitate constant re-evaluation of research conduct. Standard approaches to research ethics such as valid informed consent, inclusion/exclusion criteria, vulnerable subjects and covert studies need to be reconsidered as developing social contexts and methodological innovation, interdisciplinary research and economic pressures pose new challenges to convention. Innovations in technology and method challenge our understanding of ‘the public’ and ‘the private’. Researchers need to think even more clearly about the balance of harm and benefit to their subjects, to themselves and to society. This series proposes to address such new and continuing challenges for both funders, research managers, research ethics committees and researchers in the field as they emerge. The concerns and interests are global and well recognised by researchers and commissioners alike around the world but with varying commitments at both the procedural and the practical levels. This series is designed to suggest realistic solutions to these challenges – this practical angle is the unique selling proposition (USP) for the series. Each volume will raise and address the key issues in the debates, but also strive to suggest ways forward that maintain the key ethical concerns of respect for human rights and dignity, while sustaining pragmatic guidance for future research developments. A series such as this aims to offer practical help and guidance in actual research engagements as well as meeting the often varied and challenging demands of research ethics review. The approach will not be one of abstract moral philosophy; instead it will seek to help researchers think through the potential harms and benefits of their work in the proposal stage and assist their reflection of the big ethical moments that they face in the field often when there may be no one to advise them in terms of their societal impact and acceptance.

While the research community can be highly imaginative both in the fields of study and methodological innovation, the structures of management and funding, and the pressure to publish to fulfil league table quotas can pressure researchers into errors of judgment that have personal and professional consequences. The series aims to adopt an approach that promotes good practice and sets principles, values and standards that serve as models to aid successful research outcomes. There is clear international appeal as commissioners and researchers alike share a vested interest in the global promotion of professional virtues that lead to the public acceptability of good research. In an increasingly global world in research terms, there is little point in applying too localised a morality, nor one that implies a solely Western hegemony of values. If standards ‘matter’, it seems evident that they should ‘matter’ to and for all. Only then can the growth of interdisciplinary and multi-national projects be accomplished effectively and with a shared concern for potential harms and benefits. While a diversity of experience and local interests is acknowledged, there are existing, proven models of good practice which can help research practitioners in emergent nations build their policies and processes to suit their own circumstances. We need to see that consensus positions effectively guide the work of scientists across the globe and secure minimal participant harm and maximum societal benefit – and, additionally, that instances of fraudulence, corruption and dishonesty in science decrease as a consequence.

Perhaps some forms of truly independent formal ethics scrutiny can help maintain the integrity of research professions in an era of enhanced concerns over data security, privacy and human rights legislation. But it is essential to guard against rigid conformity to what can become administrative procedures. The consistency we seek to assist researchers in understanding what constitutes ‘proper behaviour’ does not imply uniformity. Having principles does not lead inexorably to an adherence to principlism. Indeed, sincerely held principles can be in conflict in differing contexts. No one practice is necessarily the best approach in all circumstances. But if researchers are aware of the range of possible ways in which their work can be accomplished ethically and with integrity, they can be free to apply the approach that works or is necessary in their setting. Guides to ‘good’ ways of doing things should not be taken as the ‘only’ way of proceeding. A rigidity in outlook does no favours to methodological innovation, nor to the research subjects or participants that they are supposed to protect. If there were to be any principles that should be rigidly adhered to they should include flexibility, open-mindedness, the recognition of the range of challenging situations to be met in the field – principles that in essence amount to a sense of proportionality. And these principles should apply equally to researchers and ethics reviewers alike. To accomplish that requires ethics reviewers to think afresh about each new research proposal, to detach from pre-formed opinions and prejudices, while still learning from and applying the lessons of the past. Principles such as these must also apply to funding and commissioning agencies, to research institutions and to professional associations and their learned societies. Our integrity as researchers demands that we recognise that the rights of our funders and research participants and/or subjects are to be valued alongside our cherished research goals and seek to embody such principles in the research process from the outset. This series will strive to seek just how that might be accomplished in the best interests of all.