Ethics and Research with Young Children

New Perspectives

Christopher M. Schulte, Christopher M. Schulte

• Publisher: Bloomsbury Academic
• Year: 2019
• ISBN:
  9781350076471
• Edition: 1
• Topic: Education
• Subtopic: Early Childhood Education

As researchers and theorists, teachers and teacher educators, parents and grandparents and advocates for children, the authors featured in Ethics and Research with Young Children share a common inclination to counter the idea of an ethics that is conventional-i.e., an ethics that reinforces existing models and discourses, which position children as irrational and incompetent; that de-anonymize children's ways of working and being in the world; that reduces and distorts the social, cultural and political forces that shape children's everyday realities; and, that routinely subtracts from these realities the complex responsibilities that adults have (especially as researchers) to recognize ethics as situated, relational, intersectional, and provisional. Aligned with the interdisciplinary commitments of a Childhood Studies approach and informed by a range of theoretical and practical frameworks, the perspectives offered in this volume are grounded in relationships between and among adults and children, their shifting social, cultural, political and material realities, and a world of ideas and experiences that impel them to face and reorient their ethical commitments to each other.

1

Rethinking Informed Consent with Children under the Age of Three

Kylie Smith

University of Melbourne, Graduate School of Education

Margaret M. Coady

University of Melbourne, Graduate School of Education, Youth Research Centre

Introduction

Since the Nuremberg trials after the World War II, informed consent has been taken to be the primary ethical concern in research with human subjects. In much of research involving children, informed consent is obtained solely from adults (guardian). With the influence of the United Nations Rights of the Child (CRC) and shifting theoretical paradigms related to the changing conceptualization of children in disciplines such as sociology, history, and philosophy, there has been an interest in exploring how young children’s consent might be obtained. The United Nations Convention of the Rights of the Child, Article 12, states that children have a right to be heard in all aspects of life including research.

This chapter explores how two researchers have grappled with and developed research pedagogies and protocols to gain informed consent from children under three years of age in research. The first author has worked as a researcher and educator in early childhood service and has challenged developmental paradigms that limited very young children’s opportunities to engage with discussions of informed consent. The second author has been engaged in teaching and research in relation to early childhood issues for approximately forty years and seen the changes from the U.N. Declaration of the Rights of the Child, and the challenges to this by the child liberationists, particularly John Holt, who wanted children’s rights to be identical to adult rights, through to the 1989 U.N. Convention on the Rights of the Child. She has also been a member of several government committees in which a primary consideration has been decisions on informed consent of children and of adults. Together we would describe our view of childhood as very much aligned with the views embodied in the CRC, and we hold that the CRC¹ resolved, particularly in Articles 12 through 16, many of the issues which liberationists identified in the earlier declaration. We have been involved in debates with members of research ethics committees, one of whom told us very firmly that young children do not have points of view. We see children, like adults, as agents in having interests and points of view (Coady, 2008). We take seriously Article 12 of the U.N. Convention on the Rights of the Child and see research as a matter that affects children, and therefore one on which they should have a say (MacNaughton and Smith, 2008; Palaiologou, 2014).

Douglas MacLean (2006) wrote: “Informed consent is a fundamental component of moral justification. It distinguishes love-making from rape, employment from servitude, and life-saving surgery from felonious assault with a deadly weapon, to mention just a few examples” (p. 668). Less dramatically, but more fundamentally, informed consent is a central notion in society, governing relations of power and agreement between human beings. Referring specifically to research, Guillemin and Gillam (2004) say “informed consent is at heart an interpersonal process between researcher and participant where the prospective participant comes to an understanding of what the research project is about and what participation would involve and makes his or her own decision about whether, and on what terms, to participate” (p. 272).

This chapter will explore the theoretical and practical implementation of research methods to support children under the age of three to participate in providing informed consent in research. We chose the age of three partly because we have worked with children of this age and partly because this age creates the greatest challenge to the idea of informed consent. In the adult-centered research environment, children can be assessed and constrained in their experiences of research (Punch, 2013), through narrow universal developmental categories that normalize and limit how young children’s cognitive and linguistic capabilities are understood. The result is that adults question or fail to recognize children’s capacity to participate in consent processes.

Since the ratification of the United Nations Convention on the Rights of the Child, there has been a major shift from seeing young children as passive recipients to viewing them as active participants in their own learning, development, and engagement with the world. General Comment (No. 7), on “Implementing Child Rights in Early Childhood,” has played a significant role in researchers beginning to explore participatory methodologies for and with young children.² General Comment (No. 7) states that the young child’s right to express his or her views and feelings should be taken into account in the development of policies and services, including research. This comment stresses that these are the rights of all children, irrespective of their age.

The National Statement on Ethical Conduct in Human Research (NHMRC) sets out the national guidelines for ethical conduct in research, stating the need to specify how researchers will judge the child’s vulnerability and capacity to consent to participation in research. The statement also describes the form of proposed discussions with children about the research and its effects; information given should be at their level of comprehension. However, this aspect of the statement remains somewhat open for interpretation and does not provide guidance on the types of protocols and practices to support young children’s engagement. While protocols and practices should be contextual to the research project and particular groups of young children, forty years of our research work with the Graduate School of Education, added to qualifications in child development and learning, have led us to some specific methodologies and protocols that are useful when researching with children under three years. While there is a growing body of research and writing that uses participatory research methods with children under the age of five, there is a paucity of research that provides specific research protocols outlining practices and processes in gaining informed consent from young children. Some of the exceptions to this are Palaiologou (2014), Dockett, Perry and Kearney (2013), and Alderson (1992), though in most cases these authors are referring to children over three.

Tensions between informed consent and children’s rights

There remain tensions between several of the elements of the CRC. In particular, there is a tension between the protective elements of the CRC and the claim that the child who is capable of forming his or her own views has “the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child” (Article 12). The protective elements in the CRC could be seen as a continuation of earlier statements of children’s rights, such as the U.N. Declaration of the Rights of the Child. This earlier document contrasts markedly with Articles 12 to 16 that flow from the more recent conception of children as agentic, as having points of view. Legal philosopher John Eekelaar (2017, 1994) addresses this tension, recognizing that many decisions must be made for children but that there are dangers in paternalism where adults may be deciding, whether consciously or unconsciously, in their own interests rather than in the child’s. To resolve this tension Eekelaar (2017) proposes the idea of self-determinism, which interprets the concept of “best interests of the child” in a way that “allows scope for the child to interpret what those interests are” (p. 129). Solving this tension is particularly relevant to informed consent in research with very young children. This self-determinism when applied to the child under three requires great empathy on the part of the parent, guardian, teacher, or researcher. Self-determinism is captured by the Latin word consentire, to be of one mind and feeling, a word from which consent is probably derived and which best describes the state of mind required between the more powerful adult and the less powerful child. Self-determinism thus constitutes the child as still active in the decision-making but not necessarily in determining the result. Protection must always be there.

Our own practices in gaining consent

While our guiding ethical philosophy is clear, the practice of self-determinism as informed consent with very young children becomes complicated, continually evolving and very different from that with adults. Drawing from Edwards and Cutter-Mackenzie (2011), we would explain this process as ethical intentionality, where seeking consent starts at the recruitment phase and continues during all of the research encounters with the participants. Ethical intentionality ensures that self-determinism and consent are an ongoing process throughout the research rather than an administrative task to tick off at the beginning and file away as a compliance activity. One of the first methods to gain children’s consent was the use of images as props to explain who the researchers are, the activities in which we are asking children to participate, how we will record or document what they say and do, what we will do with their ideas (for example, write = image of a pen and paper or computer, or talk with other people = image of a group of people talking), and that they can say yes or no to participate (consent = image of a head nodding yes or no or a hand with a thumbs up or down or a smiley face or frown). This can take the form of a paper document with the images on one page or it could be a series of individual photos or pictures.

One caution is that focusing on elaborate designs can mean both researcher and participant lose sight of the ethical purpose of the material, which is to inform or explain what the research is that children are being asked to participate in, what they would actually do, and that they have rights to agree or say no to being part of the research. These rights continue throughout the research so that even after initial agreement they can change their minds and say no to participation at any stage of the research. This method of obtaining informed consent reminds us to continually return to the key premise of self-determinism in consent. For example, when a three-year-old had worked with us, spending over an hour drawing and talking about her ideas, we asked if we could take a photograph or photocopy the drawing to use in our research. She declined stating that she wanted to take it home (MacNaughton and Smith, 2005, p. 119). We did not take a copy of the drawing. This example illustrates our ethical intention of ongoing consent; we asked the participant if she would like to be part of the research at the beginning of the research encounter and then asked for consent when recording data (the child’s drawing) at the end of the encounter. A vital aspect of self-determinism is that we listened to the participant and acted when she withdrew consent for us to use her drawing. We refer to this as ethical listening—listening, hearing/seeing, and responding. Ethical listening is a tricky balance woven into the activities of “capturing” or collecting data.

Ethical listening has been particularly important for us when researching with babies. A child’s willingness to engage with the research in the moment of data collection can be heard and witnessed in many different ways. Drawing from developmental theories, one way to see if a baby is willing to engage with the research is if he or she makes eye contact. While we acknowledge eye contact is deeply embedded in Western cultures and may not be relevant in every context, for many of our baby participants eye contact is a way to engage and create strong attachments between the baby, family, and researcher. With this noted, for some babies, actions such as avoiding eye contact and strongly moving their head to the side are indication that they are tired. Another baby or toddler may shake his or her head from side to side or pull on his or her ear as a self-soothing exercise. As researchers, if we are not ethically paying attention we can read this, with a developmental frame or ageist bias, as that they are too young to concentrate. If you read the actions in this way, you may try to reengage with the child trying different tools or toys to get the child’s attention. A more informed ethical gaze would cause us to reflect and consider whether the child’s action signals the need to just pause or acknowledge that the child has withdrawn from the research activity, in which case the researcher would stop collecting data. Working with families and caregivers is important to ensuring young children’s consent as these people can help you learn about visual cues in order to understand when the child has disengaged and withdrawn from participation.

Ethical environments

Often researchers strip back the research space or create a specific space that enforces containment of the child by using a high chair or sitting the baby or toddler on an adult’s knee or on a chair at a table (Swadener, 2016). The rationale for this can be about not wanting the child distracted by other activities or materials in the environment with a view that young children can be “easily” distracted. We would argue that one way for babies and toddlers to make choices about or consent to participate in the research activity is by creating an environment where there are a number of activities and materials for the child to explore. A baby may reach for other materials as a way to indicate that he or she does not want to participate in the research activity. Toddlers may physically move by crawling or walking from the research activity to another space. This may mean for the researcher that she needs to allocate more time for data collection, to be able to wait and be guided by the interests of the children. It is possible that it may mean that the researcher has to accept that the child has withdrawn. Young children’s emerging communication skills mean that the certainty of the child’s consent can be unclear.

Disciplinary differences

In a recent piece of research interviewing researchers working with very young children across various disciplines in both the University of Melbourne and several international institutions, we found a large majority of our respondents viewed young children as rights-bearers and made attempts to get meaningful consent from the participating children in their research. Perhaps this was not surprising given that the respondents were self-selected. However, it does contrast with some views expressed by research committees in past decades. Few would now claim that very young children do not have points of view.

As part of this research, we used four levels of informed consent proposed by Alderson and Montgomery (1996): to be informed (level 1), to form and express views (level 2), to influence a decision (level 3), and to be the main decider about proposed treatment or care (level 4). Three-quarters of our participants felt that children be treated as being at level 3 or level 4 in the consent/assent process in their own research. Discipline area seemed to play a part in participants’ responses to this question. For example, all three participants undertaking research in medicine selected level 1, while two-thirds of the participants work in education and all but two of these selected level 3 or 4. To gain a more rounded perspective in our research we asked if respondents would be prepared to be interviewed after the survey. Among those agreeing to this were two medical respondents. It was clear from the interviews that those medical researchers shared our view of the CRC, but held very realistically that a child under five would not agree, for example, to having blood taken by needles, though one experienced researcher said she was able to explain her work to the satisfaction of children aged over seven that they would be helping other children.

These examples from medical researchers highlighted some of the issues facing children who are asked for consent. While a little over half of respondents answered that there were negligible or no harms in their research, as Alderson and Morrow (2012) suggest, the harm in social research can be undere...