Ethical research involving children: Putting the evidence into practice

Abstract

Undertaking research with children and young people gives rise to a number of ethical challenges and dilemmas - both predictable and unforseen. This article introduces the Ethical Research Involving Children (ERIC) project, which provides a best-practice framework for approaching such issues and ensuring that research involving children can justifiably be deemed 'ethical'. Researchers and policy makers are invited to access and contribute to the project's resources.

Undertaking research with children and young people gives rise to a number of ethical challenges, dilemmas and issues, both predictable and unforseen. The stewardship of ethical research is the responsibility of everybody involved, including those engaged in funding, approving and undertaking it, as well as policy-makers and practitioners using research findings in their work. Consequently, there is a need for critical engagement by all stakeholders around some basic, but important, questions that are essentially ethical in nature and require close attention long before the research makes its way to any kind of ethics review committee. Such questions include, "Does this research need to be done?" and "Who will the research benefit and how?" The importance of these kinds of questions intensifies when the research involves children and young people: "Is children's participation in the research necessary or can the information be obtained in other ways?"; "What would be the likely [ethical] consequences of not involving children?"

The Ethical Research Involving Children (ERIC) project has endeavoured to address these and many more questions that arise when funding, governing or undertaking research involving children. Following extensive research and consultation internationally, the print and web-based resources developed through the ERIC project (Graham, Powell, Taylor, Anderson and Fitzgerald, 2013) provide a useful framework for approaching these and multiple other considerations that are core to ensuring research involving children can justifiably be deemed "ethical". This article introduces the ERIC project and resources to Family Matters readers and invites further engagement, dialogue and sharing of experience in the continued international movement towards safe, respectful research that foregrounds children's dignity, rights and wellbeing, across all methodological, social and cultural contexts.

Children's involvement in research

In recent years there has been a considerable increase in research and evaluation activities involving children and young people, across a range of contexts including family, school, work and out-of-home care. Previously, research tended to inquire into children's lives through the perspectives of parents or other significant adults (Christensen & James, 2000). The increased direct involvement of children and young people is attributable in large part to shifts in the ways in which children and childhood are viewed, which has been substantially aided by scholarship around children's rights and the emergence of the interdisciplinary field of childhood studies. The United Nations Convention on the Rights of the Child (UNCRC) has been instrumental in drawing international attention to children's rights to protection from harm, provision of care and resources, and participation in matters that affect them, including through research. Developments in childhood studies have seen a paradigmatic shift from constructions of children and childhood framed in terms of vulnerability, dependency and immaturity, to perspectives that highlight competence and agency, leading to increased emphasis on accessing and listening to children's views (James & Prout, 1990; Pufall & Unsworth, 2004; Woodhead, 2009). Consequently, there is considerably more involvement of children and young people in research with a range of well-documented research approaches and methods to engage them actively (see for example, Tisdall, Davis & Gallagher, 2009).

Ethical considerations

Alongside children's increased participation in research, attention is being drawn to the many ethical issues arising as researchers report their own experiences in a range of contexts (see for example, Abebe, 2009; Bone, 2005; Cummins, 2006; Ebrahim, 2010; Lahman, 2008; Mudaly & Godard, 2009; Richter, Groft & Prinsloo, 2007; Trussell, 2008; Valentine, Butler & Skelton, 2001). As a result, there is now a considerable body of literature focusing on numerous areas of ethical concern in different research contexts (Powell et al., 2012). Despite this, researchers and other stakeholders continue to report a sense of isolation and a lack of awareness of or access to resources to support, guide and inform ethical research practice, leaving them reliant on their own ethical principles, previous experiences and institutional ethics requirements (Powell, Graham, Taylor, Newell & Fitzgerald, 2011). The quality of research practice can thus vary considerably. Given this backdrop, some researchers describe a sense of failure or inadequacy when confronted with ethical challenges and dilemmas (Horton, 2008; Robson, Porter, Hampshire & Bourdillon, 2009).

In many international contexts, including in Australia, research practice is governed by institutional or professional procedural ethics, that is, formal ethical review processes and codes of conduct. Gaining approval from an ethics review committee, for example, is standard procedure prior to commencing a research project in many institutions, particularly where the research involves humans or animals. Procedural ethics play an important role, protecting research participants and institutions, and supporting researchers (Alderson & Morrow, 2011).

However, queries are often raised about the evident limitations of procedural ethics in ensuring research is ethical throughout its duration (Gallagher, 2009). While ethical procedures can be rigorous in some respects, such as protecting children from obvious harm, other areas may be less well attended to; for example, ensuring that children are well informed, able to consent or decline without undue pressure and withdraw if they wish (Powell & Smith, 2009). Research that involves children often confronts challenges and dilemmas that arise as part of the research process, and hence could not have been anticipated, or guarded against, at the outset (Alderson & Morrow, 2011; Hill, 2005; Morrow & Richards, 1996). Ethical tensions are evident, for example, in the ongoing negotiation of the multiple relationships in research contexts involving children, beyond the usual researcher-participant pairing, and amplified by power disparities and dynamics particular to adult and child relations (Gallagher, 2008; Holland, Renold, Ross & Hillman, 2010). While some of the issues researchers navigate may be quite specific to the focus or context of their inquiry, these are often linked to broader questions that frame their practice, such as:

* Can I ensure children will not be harmed by involvement in the research?

* How will I respond if children become distressed or upset?

* What information do children need to provide authentically "informed" consent?

* Is parents' consent always required for children to participate in research?

* If parental consent is required, should this always include both parents' consent?

* What if children and parents have conflicting opinions about research participation?

* What locations and methods are best for respecting children's privacy?

* What protocols are in place for responding to a child's disclosure of harm or abuse?

* What professional services and supports are available if required for children?

* Should children be paid for their involvement in the research?

Questions such as these highlight the "micro-ethics" of research or everyday "ethically important moments" (Guillemin & Gillam, 2004, p. 261) and the ongoing nature of ethical decision-making, continuing long after ethical approval has been granted and compliance obligations met. It is the questions and challenges that arise in these "moments", particularly in contexts where little support or guidance might be provided, which prompted the Ethical Research Involving Children (ERIC) project.

The Ethical Research Involving Children (ERIC) project

The ERIC project emerged from a recognised need for ethical guidance to support researchers throughout the research process, and to help inform the efforts of other stakeholders including institutions that commission and use research, funding bodies and ethics review committees. The origins of the project rest in work undertaken in conjunction with the Childwatch International Research Network, including an initial survey of 257 researchers working in diverse social, cultural and development contexts, across different disciplines, in 46 countries, to identify priority ethical issues and concerns around research involving children (Powell et al., 2011). The diversity of contexts was especially apparent in the definitions of "child" provided by researchers, which ranged from below 12 years to over 18 years.

The survey findings pointed to a range of ethical issues, including: researchers' capacity to include children in research; consent and access to research participation; overly protective ethical review processes; confidentiality; socio-cultural views of children and childhood; and protection of children. Researchers reported that their ethical training tended to be an informal evolving process, dependent in part on the availability and accessibility of resources, such as publications, supervision, mentoring and collegial support. However, researchers also reported a lack of such resources to support and guide them in attending to ethical issues, with the major influences on their research practice being their own ethical principles and experiences, as mentioned earlier.

At this time, it was also recognised that an important starting point for addressing the matters identified through the survey was to engage critically with existing knowledge in this area through a comprehensive review of literature. This review identified numerous issues clustering around four key areas of ethical concern - harms and benefits, informed consent, privacy and confidentiality, and payment and compensation (Powell et al., 2012).

The findings from the survey and literature review were considered at a 2011 meeting, in London, of internationally recognised experts in research with children and young people, who identified that, in the absence of internationally agreed standards for ethical research with young participants, there was an evident need for accessible, high quality resources to guide and support researchers in contexts as diverse as those represented in the survey sample. Consequently, a collaborative partnership was formed between the Centre for Children and Young People at Southern Cross University, UNICEF Office of Research Innocenti, Childwatch International Research Network and the Children's Issues Centre at the University of Otago to progress this work. Following extensive research and international consultation over the ensuing two-year period, involving almost 400 members of the research community, the ERIC project generated an extensive range of print and online resources to support ethical research involving children. These resources have already been accessed by researchers and other stakeholders in 176 countries.

The ERIC resources

The ERIC approach draws on researchers' collective knowledge to highlight best practice while grounding ethical decision-making in the realities of everyday research experience. It recognises that while major ethical principles such as justice, benefit and respect are universal, the application of these is affected by the diverse social, cultural, political and methodological settings in which research occurs. ERIC offers a distinctive approach, in which these universal ethical principles are enacted through a framework that promotes reflexivity, rights and relationship as core to the kind of critical engagement required for ethical decision-making.

Reflexivity in ERIC refers to "the capacity of researchers to reflect critically about the impact of their research on participants and their communities, on researchers themselves, and on the body of knowledge under investigation" (Graham et al., 2013, p. 176). Inclusion of rights recognises children's entitlement to fundamental human rights, alongside those particular rights relevant to their status as children as articulated in the UNCRC. Thirdly, relationship explicitly acknowledges that every research endeavour takes place within the context of multiple relationships, including, but not limited to, those between researchers, children and young people, parents, other family members, guardians, caregivers, significant adults/gate-keepers, institutions and funding bodies. These "three Rs" are integral to the work of ERIC as it attempts to foreground critical engagement, dialogue and collaboration as a cornerstone of ethical decision-making while provoking closer attention on the human dignity and wellbeing of children in any research endeavour.

The ERIC resources are freely available, in a high quality print-based compendium (Graham et al., 2013) as well as via the website <www.childethics.com>, which allows for new material to be added, and interactive dialogue to occur, on an ongoing basis. The resources include:

* an International Charter for Ethical Research Involving Children, which is an aspirational statement of seven commitments that aim to elevate the status, rights and wellbeing of children (see Box 1);

* extensive Ethical Guidance that draws on evidence-based literature and researcher experience in relation to four key areas (harms and benefits, informed consent, privacy and confidentiality, and payment and compensation) to offer best practice requirements, discussion of key considerations and challenges that might be met, references to case studies and relevant UNCRC articles, and key questions to promote critical engagement and reflexivity;

* Getting Started, a framework of structured questions, to encourage reflexive engagement with ethical considerations throughout the different phases of the research project;

* a collection of Case Studies written by researchers showcasing actual ethical challenges and dilemmas they have experienced in a wide range of social, cultural and methodological contexts, their response to these and some reflexive questions and considerations;

* an online Resources library, which is regularly updated with abstracts from journal articles, books and book chapters and other literature; and

* a monitored Forum providing a platform for questions, discussion and debate.

Box 1: International Charter for Ethical Research Involving Children

As a research community working with children, we are committed to undertaking and supporting high quality ethical research that is respectful of children's human dignity, rights and wellbeing. The following seven commitments guide our work:

Ethics in research involving children is everyone's responsibility

We, the research community, including all who participate in undertaking, commissioning, funding and reviewing research, are responsible for ensuring that the highest ethical standards are met in all research involving children, regardless of research approach, focus or context.

Respecting the dignity of children is core to ethical research

Ethical research is conducted with integrity and is respectful of children, their views and their cultures. Involving children respectfully requires that researchers recognise children's status and evolving capacities and value their diverse contributions.

Research involving children must be just and equitable

Children involved in research are entitled to justice. This requires that all children are treated equally, the benefits and burdens of participating are distributed fairly, children are not unfairly excluded and that barriers to involvement based on discrimination are challenged.

Ethical research benefits children

Researchers must ensure that research maximises benefits to children, individually and/or as a social group. The researcher bears primary responsibility for considering whether the research should be undertaken and for assessing whether research will benefit children, during, and as a consequence of, the research process.

Children should never be harmed by their participation in research

Researchers must work to prevent any potential risks of harm and assess whether the need to involve the individual child is justified.

Research must always obtain children's informed and ongoing consent

Children's consent must always be sought, alongside parental consent and any other requirements that are necessary for the research to proceed ethically. Consent needs to be based on a balanced and fair understanding of what is involved throughout and after the research process. Indications of children's dissent or withdrawal must always be respected.

Ethical research requires ongoing reflection

Undertaking research involving children is important. Ethical research demands that researchers continually reflect on their practice, well beyond any formal ethical review requirements. This requires ongoing attention to the assumptions, values, beliefs and practices that influence the research process and impact on children.

Source: Ethical Research Involving Children: Charter <childethics.com/charter>

Conclusion

The vision of the ERIC project is to encourage ongoing collaboration and dialogue between members of the international research community in supporting, guiding and improving our respective efforts to lead and facilitate ethical research involving children. (For further elucidation of the vision, background, philosophy and underlying principles of ERIC, see also Graham, Powell & Taylor, 2014). The ERIC project team warmly encourage Family Matters readers, along with the wider child and family research and policy community, to actively engage with the ERIC resources, contribute case studies, recommend relevant journal articles and other resources, and join in the conversation on the Forum by commenting on topics displayed or adding a topic for discussion.

Professor Anne Graham and Dr Mary Ann Powell both work at the Centre for Children and Young People, Southern Cross University, New South Wales. Associate Professor Nicola Taylor works at the Children's Issues Centre, University of Otago, New Zealand/Aotearoa.

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