Ethical Research Involving Children: Encouraging Reflexive Engagement in Research with Children and Young People

Abstract

Research involving children raises complex and well-documented ethical questions and challenges that extend far beyond the reach of formal review and governance systems, where these exist. However, researchers collectively have a wealth of knowledge and experience in applying universal ethical principles in diverse social, cultural and methodological settings, which offers much potential for understanding how ethical concerns are responded to in situ. Through extensive consultation and research, the Ethical Research Involving Children (ERIC) project, discussed in this article, has drawn on this collective knowledge in generating evidence-based resources that highlight best practice while grounding ethical decision-making in lived experience.

Understanding the Ethical Requirement for Parental Consent When Engaging Youth in Research

“…Their intimate relationship with the child often means they are best placed to make a decision on whether participation is in their best interests. During the research process parents can take on a supportive role and provide guidance to their child in helping them to formulate their views (Graham et al, 2013). Parents can also be a reassuring presence.…”

“…It can also present a barrier for transient, including homeless youth who have limited contact with their parents (Abrams, 2010) or for youth who are in a situation where there is no parent or legal guardian able to give consent for the child to participate. This has been identified as an issue when researchers have sought to involve young carers in studies in sub-Saharan Africa, where the AIDS epidemic has left children and youth in child and youth-headed households (Graham et al, 2013) 4 . Participation may also be precluded when parents, not acting in the interests of their children, are unwilling to provide consent due to their fear of a disclosure and a child protection intervention as a result of their child participating in the study.…”

“…Children and youth may feel constrained to comply with the decision of their parent to provide consent or not (Graham et al, 2013). For this reason, even when parents provide their consent, the importance of emphasizing to the young research participant that they can withdraw their consent has been highlighted as an important safeguard to ensuring voluntary consent (McCarry, 2012;Shaw et al, 2011).…”

“…It is intended to provide guidance to researchers worldwide irrespective of context and is a useful tool in the absence of national guidance. It states that, in all research involving children, children's informed consent must be obtained alongside parental consent (Graham et al, 2013).…”

“…It requires the researcher to take the time to provide to the research participant and their parent adequate and accessible information on the study, to verify that they have understood the information provided, to ask the participant and their parent to voluntarily document their consent or refusal and to ensure that all parties are aware that consent can be renegotiated or withdrawn at any stage of the research process (Roth et al, 2013;Graham et al, 2013). These steps outline the process in obtaining active consent.…”