Ethical Research with Children

Untold Narratives and Taboos

Sarah Richards, Jessica Clark, Allison Boggis, Jessica Clark, Allison Boggis

• Publisher: Palgrave Macmillan
• Year: 2015
• ISBN:
  9781137351319
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

An increasing interest in children's lives has tested the ethical and practical limits of research. Rather than making tricky ethical decisions, transparent researchers tend to gloss over stories that do not fit with sanitized narratives. This book aims to fill this gap by making explicit the lived experiences of research with children.

1

Boundaries and Battlegrounds: Negotiating Formal Ethical Approval for Research with Children and Young People

The Nuremberg Code (1947) and the Declaration of Helsinki (1964) are both heralded as the result of what are now widely recognised as notorious examples of unethical research including the Tuskegee syphilis study from the 1930s to the 1970s and Stanley Milgram’s obedience research in the 1960s, not to mention the atrocities that took place during the Holocaust. These formal protocols and frameworks, developed in the United States and Western Europe, aim to guide the ethical conduct of human research and have seeped from governing medical research into other disciplines including the social sciences. These trends have led to the establishment of Research Ethics Committees (RECs) (known internationally by different terms: for example, Institutional Review Boards (IRBs) in North America) in a range of institutions including the United Kingdom’s National Health Service, research councils such as the Economic and Social Research Council (ESRC) and universities and Higher Education Institutions (HEIs) around the world.

The aim of RECs is broadly to guide and support sound ethical research practices and to safeguard participants and researchers alike. Both the committees themselves and the guidelines that they may make use of (for example, the ESRC Framework for Research Ethics 2012, British Educational Research Association (BERA) Ethical Guidelines 2011 or British Sociological Association (BSA) Statement of Ethical Practice 2002) have been criticised across a range of areas including becoming increasingly bureaucratised, drawing upon a medical model that is inappropriate for the social sciences and restricting potentially ‘risky’ research which is viewed as important and legitimate – for example, research on so-called sensitive topics or with participant groups who are perceived as vulnerable (see arguments, for example, in Dingwall 2008, 2011; Hammersley 2009; Hammersley and Traianou 2011). The discussions here are purposefully focused on the governance of ethical research in the United Kingdom as this is the context where our research has been conducted. However, there is a need to examine the development of ethical regulation more broadly across the globe, outside of dominant Western perspectives which run the risk of being imposed on a range of cultures in somewhat imperialist terms (Benatar 2002).

The aim of this chapter is not to engage in overarching arguments surrounding the degree to which social science research with (or, indeed, without) children should be subject to ethical regulation or the form that this should take. Rather, here we will consider how individual researchers negotiate existing formal ethical procedures and the impact of this on all the individuals involved. We will focus on three specific issues that we ourselves have experienced during ethical approval processes and that are growing to be increasingly common sights in the literature (see, for example, Monaghan et al. 2012; Skelton 2008): first, the positioning of children as providing assent rather than consent in the research process; second, the often imposed existence of third parties within research interactions; and finally, the governance of the kinds of individuals ‘allowed’ to do research with children and the topics that are and are not acceptable to talk about. Sikes and Piper (2010) highlight the importance of listening to researcher’s stories. Narratives of such processes shine an important light on the often contradictory priorities of childhood researchers and on the RECs and ethical guidelines which govern their endeavours. We will explicitly consider our experiences of making applications to RECs for our own research and as dissertation supervisors supporting students in their first forays into primary research. In exploring these narratives, we will argue that fundamental philosophical assumptions about the nature of childhood and the competencies of children position children and young people as a homogenously ‘vulnerable’ group with certain ‘sensitive’ topics constructed as perpetually ‘inappropriate’. We also draw attention to the emotional costs to researchers and supervisors of engaging with risk-averse RECs and the impact on the creation of knowledge in particular arenas, which are constructed as taboo and ‘out of bounds’. Such positions foreground an overly enthusiastic principle of protection over and above that of participation whereby we risk denying the right of people to participate in research through ‘unnecessarily protective and paternalistic measures’ (Huxley et al. 2005:59).

Children’s assent versus informed consent

Informed consent is closely associated with the ethical principles of ensuring respect for persons (Brooks et al. 2014). This includes broadly three key principles: first, that adequate knowledge is provided to prospective participants; second, that consent is voluntary at the outset and throughout the research process; and third, that such decisions are made by competent individuals choosing freely (Brooks et al. 2014). This model of consent has been critiqued by particular scholars for being based on a neo-liberal, individualist and masculine model of personhood (Hammersley and Traianou 2012). It is further complicated when considering the philosophical positioning of children in contemporary Western societies as vulnerable, dependent and irrational (Archard 2004). Such discursive constructions of childhood have historically made it very difficult for adults to consider children as capable of offering such consent. Recent changes in the positioning of children heralded by the new social studies of childhood (James et al. 1998) and the United Nations Convention on the Rights of the Child (UNCRC) mean that assumptions of children’s inability to participate meaningfully in decision making have been questioned. What concerns around informed consent reveal is a focus on the way in which power relations play out in research relationships (Thorne 1980) and, as is increasingly being considered in contemporary research contexts, the desire of institutions that govern research to protect themselves from legal consequences arising from research (Edwards and Mauthner 2012). The experience detailed below briefly articulates what happened to one of our dissertation students in their negotiations with ethics committees whereby the issue of children providing informed consent was far from straightforward.

As members of academic teaching staff, we all regularly act as undergraduate dissertation supervisors, and recently, Jessica supervised a student, Rebecca, who was proposing to conduct research in a setting that was also governed by an additional regional REC external and separate to the university REC. In this section, we specifically consider Jessica’s experiences of supervising this student as they engaged in a series of negotiations between these two RECs. Rebecca wished to explore children’s perspectives on healthy eating, using informal focus groups and drawings with children aged 3–4 years old in an early years setting. Within our institution, Rebecca’s research gained ethical approval on the basis that her participant-led, child-centred methodology and documentation were considered ethically sound by the university REC. Due to the location of the setting, Rebecca also had to apply for ethical approval with an additional REC external to the university. This REC, on considering the proposal, reached a conditional decision whereby a series of requirements had to be met in order for ethical approval to be granted. The first of these conditions was a change of wording throughout the proposal and all documentation. This change entailed a shift from referring to children’s ‘informed consent’ to their ‘assent’. We use this example to consider the contradictory dilemmas that using the terms ‘assent’ and ‘consent’ in research can create.

Assent is defined as the child’s permission or affirmation of agreement to participate in research (Broome and Richards 1998) and is regarded by some researchers as a substitute for consent so that children do not consent in their own right but assent to their parent’s consent (Powell and Smith 2010). Assent is not a legally mandated process (Twycross 2009), and, in addition to cases where parental consent may itself be inappropriate or harmful, we question whether the upholding of dignity, highlighted in many ethical guidelines (BERA 2011; BSA 2002; ESRC 2012) and in key human rights instruments (Bell 2008), can be maintained while positioning children’s agreement as lesser than that of adults within the research process, with their views and desire to participate (or not) as having reduced value. This ‘fails to accord them the same rights as adults in terms of what their consent means’ (Skelton 2008:23). Examples of this can be found in other research stories; for example, Scott (2000) documents that there was a desire in their research to use a cash incentive with children completing their version of the British Household Panel Survey (BHPS) to mirror that which was provided to adults. They, as researchers, had an inherent desire to place the same value on children’s contributions as that of adults. This ideological commitment was somewhat constrained by financial budgets which resulted in the young people being paid a sum, but that was less than that of their fellow adult participants.

This issue is an example of how social research is ‘a complicated balancing between many opposing options and minefields’ (Hallowell et al. 2005:142); it also highlights the continued ambiguity about children’s voices and the problems that still remain in attempting to empower children and young people in the research process. As Lukes (2005) argues, caution is particularly necessary in relation to the least visible, and therefore most potent forms of power and ethics is partly, in our view, about avoiding abusing power discrepancies between researchers and participants (Alderson and Morrow 2006). In considering the positioning of children as unable to provide full informed consent (see, in addition, discussions in Chapter 4), we were presented with a motif of children as irrational beings without the desired capacity to participate fully in social life. Drawing on Foucault’s concept of the ‘examination’, ethics review processes can be seen as disciplinary strategies that combine techniques of an observing hierarchy and those of normalising judgements (Guta et al. 2013) functioning as a ‘normalising gaze, a surveillance that makes it possible to qualify, to classify and to punish’ (Foucault 1995:184). The classification of children as incapable subjects reinforces the perpetual ‘othering’ of children within the research process (Lahman 2008), and such practices contribute to the more general powerlessness of children under an adult gaze. Frankel (2012) argues that a barrier to children’s engagement in social and moral discourses has been and remains based on the extent to which children are seen as competent to engage with moral issues (see further discussions in Chapter 5 on children’s autonomy). Philosophers such as Aristotle and Locke saw moral reasoning as linked to full ‘adult’ humans, with children viewed as on the journey to such desired capacity (see Archard 2004). These philosophies provided the backdrop for stage-based psychological theories regarding children’s development which emphasise the development of children and their ability to attach moral meanings to their actions. The risk here is that children become objectified as passive social objects, conceptualised as lacking the rationality and reasoning to make social or moral decisions (Clark 2014). This includes the ability to process information about and consent to participating in social research. However, we argue that positions such as these, those that use the language of assent rather than consent, fail to recognise the extent to which even very young children engage in decision making, whereby morality is part of the everyday life of all human beings (see Mayall 2002; Short 1999).

It has been argued that this can be attributed to the fact that traditionally RECs have not been developed from a child-centred perspective (Skelton 2008), and many organisations still lack explicit guidelines for child-centred research (Hendrick 2000). The principles and regulations that guide REC decision making thus appear to exist in contradiction to many of the approaches and ontological assumptions used in contemporary research with children. As Boden et al. (2009) point out:

Social science has a long and creditable history of praxis on ethical issues, both in terms of research conduct and consideration of how the resulting understandings may be deployed.

The development of such work is evident in some ethical guidelines, for example, the BSA (2002), which are the product of long traditions of scholarly work on ethics and power in research (see, for example, Hollway and Jefferson 2000; Mauthner et al. 2002; Silverman and Gubrium 1989). These guidelines attempt to be widely drawn and recognise the need for researchers to make rapid and pragmatic decisions in the field (Boden et al. 2009). They do not, however, always offer researchers a useful tool for guiding or supporting decision making. As Flewitt (2005) states, she found little practical support in ethical guidelines to support the translation of general principles into actioning the specific issues that arose in the course of her fieldwork. In addition, such guidelines often do not explicitly take into account the methodological and ethical issues that may arise in relation to research with children or the development and role of children’s rights, both in the United Kingdom and globally, on such research philosophies and practices.

Research with children, as advocated by the ‘new’ social studies of childhood (James et al. 1998), views children and young people as agentic social actors who actively contribute to their social worlds and, as such, should be viewed as co-creators of knowledge within the research process. The United Nations Convention of the Rights of the Child (UNCRC 1989) Articles 13 states that children ‘shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers’. However, in the case of Jessica’s student, the position adopted by that of the additional REC whereby there was an explicit desire that the student used the language of assent rather than consent in her documentation and research proposal seemed to be in direct contradiction to the approaches to research with children articulated in literature on child-centred research practices, taught by supervisors, promoted by the university REC and believed in by the student researcher. As Boden et al. (2009:742) argue:

[B]y categorising people as vulnerable and therefore unable to decide for themselves whether or not to participate in research, ethics committees are accreting to themselves these people’s power of exercising voice.

Third-party involvement

Another area of contention in published stories of research with children, and indeed in the experience of our undergraduate student negotiating the contradictory demands of two RECs, involved the role of third parties within the research process. This relates to both additional ‘researchers’ from within the setting or appointed to surveil the research being undertaken and the storage and handling of the resulting data. Rebecca’s research proposal stated clearly the plan to use tape recordings of the children’s conversations while they undertook a free drawing activity if they wished. These drawings could be kept by the child, given to the researcher or photocopied depending on the children’s wishes. This, along with the issue of the tape recorder, was addressed in the information letter and consent documentation for the children, the parents and the gatekeepers but was also to be negotiated verbally and ongoing throughout the research. The student had carefully explained the secure, confidential and anonymous storage of the research data within her proposal. However, the additional REC stipulated that the data should not leave the setting and that other members of staff within the setting would be able to have access to the data, notably the manager who held the key to the locked cabinet within which it was to be stored. There was a fundamental difference here in perceptions of ownership of the ‘data’ between the university REC and the external REC. As both a supervisor and a researcher, Jessica considered the voices of these children to belong first and foremost to the children themselves and, upon gaining their permission, the data could be used by the researcher whose duty was to keep it confidential, anonymous and to represent such voices fairly and honestly. The university REC considered that it is the student researcher’s duty for safe and confidential data storage and handling. In contradiction, the external REC appeared to indicate that the setting itself and the other staff within also had a claim to this data, to be able to access and view it and to be responsible for its safe storage. We were puzzled as to how the student was to work with her data if it was not able to leave the setting. We also considered that the manager of the setting and the other staff had no right to see the raw data where children and their views would certainly have been identifiable to staff who work with them and know them well. Jessica considered that this violated the claims to confidentiality and anonymity, which the student researcher had made to those participating in the research, in the proposal, information letters and consent forms (with notable exceptions for safeguarding issues). This is not an unusual occurrence in research which takes place in institutions of education and care for children whereby researchers have to grapple with varying demands regarding the confidentiality of data. As Barker and Weller (2003) articulate, it is not unusual for teachers to want to hear or see interview data considering they have a right to do so, given the setting of the research in their classroom or their role as a gatekeeper in the researcher’s access to the child participants. The management of such pressurised situations is not easy (Masson 2000) as refusal to capitulate directly contradicts the mechanisms of surveillance that dominate such institutions (Barker and Weller 2003). This is particularly the case for student or new researchers engaging in their first forays into research with children. This is also particularly difficult if such researchers have an existing relationship with the setting as a volunteer or employee, for example.

As supervisors, we began to reflect here on the insistence and appropriateness of involving others in the research process. Monaghan et al. (2012) also document that their REC requested an independent third party should be in the room during their research when interviewing the children who had agreed to participate. In Monaghan et al. (2012) detail the experience of Maria O’Dwyer, one of the co-authors, who defended her research from the inclusion of additional adults. Maria’s decision was based on the argument that the inclusion of multiple adults in interviews with children could in fact contribute to the creation of a more unethical situation where the children involved felt pressured and surrounded by a multitude of ‘powerful’ adults. The external REC, having considered the proposal, listed by name the other staff in the setting and wanted their role in the research clarified. Our student had made it clear that she was the principal and only researcher on the project. No others had been identified, and it was through separate investigation that the external REC identified other members of staff in the setting and made a series of assumptions about their involvement.

The implications of such stipulations by RECs may appear at first to be small or easily managed, but they relate to wider assumptions about the ownership of data and the voices of children. Concern was not articulated here by the external REC that the children’s experiences, what they had chosen to share with the researcher of their own volition and about confidentiality. As adults in the lives of these children, the employees and leaders in the setting in which the research was undertaken were considered to have a right to see or, at the very least, be tasked with ‘holding’ the data. The implications of adult/child power relations in particular settings is considered in much more detail in Chapter 2; however, as with the previous assent/consent discussion, what this experience reveals is a fundamental questioning of children’s voices as legitimate and owned by themselves. They are somehow undeserving of the same degree of confidentiality afforded to adults by virtue of philosophical attributes of childhood itself (discussed in the following section) which deem them to be irrational, incompetent and vulnerable.

Ethical enthusiasm in childhood studies: Taboos and boundaries

Ethical enthusiasm has been noted in childhood studies (Hammersley 2009) where Graue and Walsh suggest that ‘one should enter the field as though on one’s knees … not merely an entry ploy but a posture that one maintains throughout the entire research’ (1998:57). The existence of ethical guidelines and their deployment by RECs are of clear benefit in prohibiting some of the unethical practices seen previously in both medical and social research. We do not advocate here that research should not be assessed for its ethical integrity, but we do share the concerns of other prolific writers in this field (Hammersley 2009; Hammersley and Traianou 2011) that such regulation risks closing down both the topics explored and groups with which research can be conducted. As articulated previously, overprotection in ethical regulation contributes towards the structural vulnerability of children reiterating children’s lack of power and status within societal structures (Lansdown 1994). We argue that true protection of children requires protection of their rights, including that of participation (see also Miller 2000; Powell and Smith 2010; Sandbaek 1999).

The argument put forward by Graue and Walsh (1998) above impacts not only on the positioning, value and rights of children within the research process but also has costs for researchers. The literature that does exist where others have shared their stories speaks to a mistrust of childhood researchers or indeed any researchers engaging in topics deemed problematic, suspicious or ‘other’ (see, for example, Goode 2010). Goode (2010) devotes a chapter in her book solely to the difficulties invol...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Figures
• Introduction
• 1. Boundaries and Battlegrounds: Negotiating Formal Ethical Approval for Research with Children and Young People
• 2. Ethical Spaces and Places
• 3. The Rights of Participation and the Realities of Inclusion
• 4. The Illusion of Autonomy: From Agency to Interdependency
• 5. Ramifications of Category Entitlement: In What Ways Does Who We Are Determine What Others Will Say?
• 6. Privileging Voices
• Conclusion
• References
• Index