Ethical Responsibility: Training and Support
Researchers and others involved in research with children are ultimately responsible for ensuring that research is ethical. Critical ethical engagement requires knowledge and skills that are sustained and enhanced by appropriate ongoing support, training and professional development. Ethics review boards also have a role to play in supporting researchers in ethical research practice.
It is the responsibility of all those engaged in research with children, particularly researchers, to work out how ethical principles apply in specific projects and across all aspects of research practice.
Both novice and experienced researchers face difficult ethical issues (Duncan et al., 2009) and experience alone is insufficient to anticipate and plan for all relevant factors (MacDonald & Greggins, 2008). Every research project has unique ethical and contextual considerations that require the researcher, and others involved in the research process, to reflect and decide on, guided by sound ethical principles.
The ERIC resources can offer support and advice for thinking through and designing ethical research, as well as developing a reflexive approach. Of particular relevance in this regard may be:
- The ERIC Guidance
- The ERIC Case Studies
- The Reflexive Tool: A Tool for Putting the ERIC Approach into Practice
It is also essential that researchers have ready access to support and professional learning through their institution or mentors to help guide and inform their work. Support may include formal and informal training and supervision arrangements, and other means of ensuring that researchers are reflecting critically on their research practice, decision-making and ethical issues that may arise. The ERIC Case Study by Daniella Bendo and Paige Sheridan entitled, Developing an Ethical and Reflexive Mindset in Emerging Childhood Researchers, offers one example of how the ERIC resources can be used as a basis and tool for ethical research training.
While mechanisms of governance and review cannot guarantee ethical practice, ethical guidelines and formalized ethical review processes can provide support for researchers and participants.
Respecting the dignity, rights and well-being of children in research requires that researchers understand, and are adequately skilled, in implementing evolving evidence about what constitutes ethical research. While many skills used in research with adults are important and transferable, these alone are not sufficient for conducting research with children. The need for researchers to have specialised skills and training is critically important (Powell et al., 2011).
Training should also focus on establishing professional boundaries (WHO, 2011). This requires an understanding of the importance and meaning of boundaries in the specific local context, as this may vary. For example, boundaries may become blurred when community-based researchers are assisting with research in their own communities. Also, perceptions of boundaries may vary across cultural contexts. In some cultures the definition of professional boundaries implies a more distant approach, which may actually be culturally inappropriate and even offensive in other cultural contexts. In some contexts, trust and closeness may be necessary prerequisites for sharing meaningful information and may even help toward balancing the uneven power relationship between researchers and participants. The quality of the data is dependent, to a degree, on the quality of the relationships formed. This further highlights the need for reflection in forming and sustaining respectful relationships, ensuring boundaries are professional and appropriate for the context.
Existing guidance also points to the importance of specialised training in particular areas. These include, for example, identifying and managing safety issues, including suspected child abuse and neglect (Gorin et al., 2008; Schenk & Williamson, 2005); supporting child-led research (Kellett, 2010); gathering information related to violence (Bennouna & Stark, 2021; Zimmerman & Watts 2003); sexual violence (WHO, 2007); child labour (Edmonds, 2005) and collecting biological samples (CIOMS & WHO, 2002, 2008).
It is not only researchers who need specialised skills but also other members of the research team, such as research assistants and field workers in large scale research projects. Researchers, interviewers and all members of the research team need skills in communication and forming respectful relationships with children, young people, parents, community members and stakeholders. Training may include an emphasis on establishing rapport with children, putting them at ease, understanding verbal and non-verbal cues, and responding to needs they might reveal during the research process (Schenk & Williamson, 2005; WHO, 2011). The ERIC Case Study by Daniella Bendo and Paige Sheridan entitled, Developing an Ethical and Reflexive Mindset in Emerging Childhood Researchers, offers one example of how the ERIC resources can be used as a basis and tool for ethical research training.
Major influences on the way research is done, as identified by researchers, include their own ethical principles, personal experiences and institutional requirements (Powell et al., 2011). Existing guidance suggests that training should provide all staff with opportunities to recognise and overcome their own prejudices (WHO, 2007, 2011), build reflexivity and ethical mindfulness (Canosa et al., 2018; Powell, Graham & Truscott, 2016; Warin, 2011), be aware of the limits of the researcher’s role and what researchers can achieve (Laws & Mann, 2004) and establish professional boundaries and self-care for researchers (WHO, 2011). Professor Tatek Abebe explores the challenges of this further in two ERIC Case Studies entitled, Immediacy of fieldwork in participatory research with children in precarious contexts, and, Reciprocity in participatory research with children in precarious contexts.
This emphasis on personal dispositions, principles, awareness and experience, highlights the central importance of providing opportunities for researchers to reflect critically on their practice, examine their assumptions, develop their understandings and review their ethical decision-making on a continuing basis. Ethical supervision, for example, provides researchers with an opportunity to reflect, discuss concerns, extend thinking, seek guidance and debrief, as well as providing a forum for accountability. Hence, ongoing support, supervision, training and professional development are essential components of the research process.
In addition to ensuring the safety of children involved in research, researchers also need to consider their own safety from harm, always placing this above completion of the research tasks (Laws & Mann, 2004). Research staff may face safety and security issues whilst engaged in fieldwork and may therefore require specific training and strategies to ensure safety, in accordance with the context in which the research is occurring. Researcher safety may require attending to security plans, back up communication systems, secure transportation and team strategies (WHO, 2007). Explicit safety protocols for researchers need to take the research context into account. Consultation is a necessary component in developing these protocols to ensure that local cultural, social and geographical factors are taken into consideration.
In addition to physical safety, it is important that researchers attend to their own distress, particularly if they are working in research contexts where this is likely to arise. It is not always possible to predict what may cause distress for members of the research team, just as it is not possible to predict what may cause distress for children. The key consideration is to be aware of possible issues that may arise and prepare in advance to manage these. Supervision can usefully provide a forum for debriefing and attending to any distress arising from aspects or events within the research contexts.
Research ethics committees (RECs) and institutional or ethical review boards (IRBs or ERBs), (hereafter all collectively referred to as ‘ethics review boards’), are a potentially useful source of support for researchers. Most national legal regulations require that research institutions establish an independent ethical review board to thoroughly review all research plans (Schenk & Williamson, 2005) and researchers are generally required to apply for ethical approval from ethics review boards prior to starting research projects (Alderson & Morrow, 2011).
Ethics review boards are established within organisations to review the ethical acceptability of all research involving humans conducted within their jurisdiction or under their auspices. They are mandated to approve, reject, request modifications or terminate any proposed or ongoing research involving humans. Ethics review boards ensure that ethical standards of conduct of research activities are met, and therefore participants are protected from harm.
However, the usefulness of ethics review boards is a source of contention and debate, between ensuring ethical scrutiny of research on the one hand, and avoiding an excessively onerous bureaucratic process on the other. Some researchers are critical of the increasingly formal, bureaucratic regulation, seeing it as ‘rule fetishism’ that does not help develop understanding of ethical decision-making in specific contexts (Gallagher et al., 2010). Ethical review processes are experienced by some researchers as overly protective, preventing children’s participation in research, and causing unnecessary and frustrating time delays (Powell & Smith, 2009). Issues of concern also include a lack of specialised child research knowledge within the membership of some ethics review boards and lack of institutional memory as membership changes. There is also a serious concern that researchers may pass on ethical responsibility to ethics review boards, who cannot guarantee that ethical research is supported and poor research is prevented (Alderson & Morrow, 2011). In short, ethics review boards have been identified by researchers as one of the issues of greatest ethical concern for researchers overall (Powell et al., 2011).
Nevertheless, ethics review boards do play a critical role and “can help prevent poor research, safeguard research participants and be a protective barrier between potential participants and researchers” (Alderson & Morrow, 2011, p. 74). The increase in formal ethics mechanisms and subsequent scrutiny of research studies and researchers can result in better protection for children (Alderson & Morrow, 2011; Balen et al., 2006). ERIC aims to provide resources to support ethics review boards in their role and promote a shared understanding and language to support ethics review boards and researchers work together to improve and advance ethical research involving children.
Managing the ethical review of research across multiple contexts
Contemporary research often involves collaborative partnerships and may involve a number of local populations and multiple ethics review boards. Consequently, this raise concerns as to how to manage the ethical review of research across these multiple contexts. The issues include managing the formal ethics review requirements of organisations and countries in which the research is taking place, as well as conforming to international guidelines. A serious and growing concern are the “double standards when minority world RECs/IRBs demand high standards but research in other countries may have little or no ethical scrutiny or accountability” (Alderson & Morrow, 2011, p. 80). This concern points to the need for establishment of review processes that take a range of national and international contexts into account. The Nuffield Council on Bioethics (2002) recommends that all countries should establish effective systems for ethical review, including establishing and maintaining ethics review boards that are independent of governments and sponsors of research. In addition, it recommends that research should be reviewed in both the country hosting the research and the country sponsoring the research. However, this does not always mean that both countries’ ethics review boards will agree, as highlighted in the ERIC Case Study by Elsbeth Robson entitled, Research Ethics Committee Conditions: Ethical Challenges of Researching with Poor Communities in Malawi.
Improving the role and capacity of ethics review boards
Suggestions for improvement include:
- There has been recent growth, particularly in health and medical research, to involve children, young people and parents in research advisory groups, which can have a role in offering ethical advice and in screening research projects (Gaillard et al., 2018; Gwara et al., 2017; Jones, Mercieca & Munday, 2020; Moore, Noble-Carr & McArthur, 2016; Pavarini et al., 2019). These are important developments, which need to continue to be advanced and reflexively critiqued. For example, care needs to be taken to ensure that children’s roles were not tokenistic, and that the heterogeneity of children is represented (Arunkumar et al., 2019; Carter, 2009).
- Developing specialist research ethics review boards, specifically for consultation regarding research with children and young people (Powell & Smith, 2009; Stalker et al., 2004).
- Co-opting individuals who have expertise in the area of research with children onto ethics review boards (Coyne, 2010b).
- Ensuring ethics review board members are required to have understandings of current thinking around research involving children and notions of children’s capacities (Campbell, 2008; Coyne, 2010b; Powell et al., 2020).
- Engaging an independent local community advisory group to monitor activities (Schenk & Williamson, 2005).
- Using independent agencies to review research proposals (Gilbertson & Barber, 2002).
- University ethics committees redesigning their systems of approval to ensure that: supervisors understand the risks involved and will monitor student researchers effectively; student researchers have adequate experience and/or training for working with children’s issues; and children participating in research are fully informed (Campbell, 2008; Moore et al., 2020). These issues resonate with those argued to be fundamental to ethical requirements in wider contexts: that children should always be required to give consent; information should always be provided to them; and researchers should have sufficient knowledge to reflexively consider children’s responses as the research process unfolds (Powell & Smith, 2009).
- Ethics review boards reviewing health research protocols involving children and adolescents should be multidisciplinary and independent, with at least one member having expertise in conducting paediatric research (Avard et al., 2011; CIOMS & WHO, 2002, 2008). If none of the members have such expertise, the Board should seek the advice of an ad hoc expert (Avard et al, 2011).
The implementation of such recommendations may better position ethics review boards to protect the children and families participating in research and provide valuable, on-going support for researchers.