STRONG FOUNDATIONS AND EMERGING THEMES
For researchers engaged with ethical research involving children, Priscilla Alderson and Virginia Morrow need no introduction. Their Handbook has shaped so much of what we know about ethical research involving children.
Priscilla and Virginia have just released the fourth version of the Handbook (Sage 2nd edition) and we are privileged to have the opportunity to discuss this with them for this month’s Expert Blog.
What do you think are the challenges for research ethics today?
Priscilla: I wrote the first version of the Handbook in 1995, after I’d worked with medical ethics since 1981. Doctors were taking research ethics very seriously, but many social researchers ignored ethics, or at least ignored formal review systems. During the early 2000s, I was pleased to see social research ethics and formal reviews being taken far more seriously. They continue to keep up vital high standards. But after the ‘rise’ in ethical awareness, we think there has partly been a ‘fall’. We have written in the 2020 Handbook about the dangers of over-bureaucratic review systems that can waste months of precious research time and funding. Bureaucracy seems to be taking over many areas of our lives, but I think national and international surveys are urgently needed to uncover the extent of delays and costs as well as the gains. We know of researchers who are grateful when ethics reviews committees are helpful, supportive and raise important new questions for researchers to address. Yet there needs to be more united work among reviewers and researchers to simplify the review systems.
Are there any new features in the fourth version of the Handbook?
Priscilla: A new section in the Handbook is a review of social researchers who criticise ethics, summarising their complaints and giving our responses. Ethics is so often seen as an extra rather separate set of tasks that researchers have to complete. Yet our book is about how ethics informs and expresses the heart of research, in its chosen topics, methods, aims and conclusions. Our review of the critics includes analysis about how their chosen research theories and their attitudes towards their participants can relate to their views on ethics.
How important do you think an International perspective is on how we conceptualise and practice ethics?
Priscilla: International views of research ethics are vital. We asked researchers to send us their examples and were very pleased to receive so many varied ones that test ethical standards around the world. One is from Rashmi Kumari, a PhD candidate at Rutgers. Her ethnography was with children aged 9-14-years in a tribal village boarding school in Central India surrounded by armed conflict. Rashmi wrote: ‘I insisted on staying in the school during my time there, unaware of how this could be interpreted. The teacher in charge at night kept saying that she was afraid that someone would take her away through the bedroom window. The teachers told me that they never sleep peacefully in the school because of constant fear. Later, I realized that I was also a potential threat, especially to children, whose everyday lives are about negotiating their way between the state agencies and the Naxalites (insurgents). Researchers have to recognise that in a “risk” environment, they may not just disrupt everyday life, but they can also pose a threat to the safety of the whole school.’
Another emerging theme in ethics is how children and young people can take part in disseminating knowledge of sensitive issues. How does your Handbook address this?
Ginny: I’m pleased that the new version includes more attention to research on child abuse and violence, and the importance of ‘trauma-informed approaches’ –not only in thinking through the effects of researchers’ questions on children, but also how to enable children and young people to participate in disseminating research findings. This helps move us from overly-protective and silencing child protection concerns, to understanding how children are active in making sense of their experiences. For example, Camille Warrington and team describe how ‘young people, aged 13–18 years, have co-presented at national and international conferences on research about sexual abuse. Risk and needs assessments precede these events – supporting young people to make informed choices about participation and what to share. … It often means choosing not to identify whether, or which, young people are affected by sexual abuse. Generally, like the adults present, young people speak on broader matters rather than personally…Ideally, conferences where young people present are closed events for professionals, policy makers and researchers. Yet, on this topic, audiences also need preparation – reminding them to contain inappropriate curiosity. But equally we prepare young people to respond – using a set of “problem cards”, helping anticipate and prepare for challenges. Once…a leading expert asked a young person “what happened to you?”, another young participant assertively replied, “we don’t need to know what happened to each other to work together – that’s not the point”, skilfully restoring the discussion to a project focus’.
It feels like online data collection and COVID-19 are very relevant and inter-related at the moment. What opportunities and risks do you think they raise for research ethics?
Ginny: There are great opportunities for data-gathering online – especially now given the situation of COVID-19 – but this also presents some risks. There are many ethics questions that need to be addressed (about children’s consent, parents’ consent, and risks to children from being online) as well as who is left out of the research because they don’t have access to computers or mobile phones (the case in high-income countries as well as low-income countries), to questions about Big Data and how children’s data are used. In the 2020 edition of the Handbook, we also discuss new questions about data protection requirements, about privacy and confidentiality and the increased use of online research with children. One of our contributors, Sonia Livingstone, calls for much greater support for ‘e-safety’ for children.
Reflecting back on your many years of researching and writing about ethics in research involving children, what is your key ‘take home’ message for novice researchers, particularly?
Priscilla: My message is about hope, change and the wisdom of youth. Useful research is mainly about problems that children and young people have to cope with, and the outlook may seem hopeless. Yet children, their views and voices, are often pointing the way to change. I became interested in research in 1972, listening to babies crying in a maternity nursery. Mothers had to stay in hospital for ten days after the birth, and were only allowed to see, touch and feed their baby every four hours. In 1978 we did a survey of the mothers’ views. They all wanted change! And quite soon after that babies were staying with their mothers and feeding on request. Children’s other protests about how they were being badly treated in hospitals have also led to great changes through research-led campaigns. I’ve written about this in Anne Smith’s book Enhancing the Rights and Well-Being of Children: Connecting Research, Policy and Practice (2015, Palgrave). I’m now researching children having heart surgery at Great Ormond Street Hospital, and am so pleased about the many changes that have been made since I did my PhD there in the 1980s, while I’m hoping for more changes based on the children’s views. As usual, I am working with much younger research colleagues because I value their fresh critical approaches.
Ginny: My message would be about respect – respect what children are telling you. Have the confidence to set aside your assumptions, be open-minded, and above all be willing to ‘listen’ carefully – and listening includes observing carefully, as well as ‘hearing’. Be inclusive – think about how children with disabilities are involved in your research, and how to include them if they are not – wherever you are in the world. This has been one of the biggest gaps in ethical research with children, and it is painful to note that many research studies still fail on this question. Be prepared to expect the unexpected – and be prepared too to answer children’s questions when they try to make sense of what you are doing – they have the right to ask, and the right to know. Finally (and this relates to all research, with anyone) don’t hesitate to seek support by reading and discussing any ethics challenges about the ethics of your research with other people (supervisors, advisors, colleagues, children or young people too) – just voicing your concerns can help you to work things out.