Introduction -- Boundaries and battlegrounds : negotiating formal ethical approval for research with children and young people -- Ethical spaces and places -- The rights of participation and the realities of inclusion -- The illusion of autonomy : from agency to interdependency -- Ramifications of category entitlement : in what ways does who we are determine what we say? -- Privileging voices -- Conclusion.

In this article, I explain why it is important for theologians to involve children in empirical research, and why children themselves can and should be considered as ‘theologians’. Therefore, I refer to theories in childhood studies and child theology (children as active participants and subjects), and also to contemporary trends in empirical research and practical theology (views on theology and ethnography, lived religion etc.). Counter-arguments for involving children in empirical research are discussed as (...) well. In the second step, I deal with ethical issues and discuss which aspects have to be taken into account when doing research with children. (shrink)

This thesis is a contribution to the ethical justification for clinical research with children. A research subject’s participation in a trial is usually justified, in part, by informed consent. Informed consent helps to uphold the moral principle of respect for persons. But children’s limited ability to make informed choices gives rise to a problem. It is unclear what, if anything, justifies their participation in research. Some research ethicists propose to resolve this problem by (...) appealing to social utility, proxy consent, arguments explaining why it is permissible to expose children to some harm, and an argument concerning the appropriate balance between research harms and benefits. I argue that each of these is a necessary part of the justification for research with children, but that the argument concerning harms and benefits is under-developed. It relies on the concept of minimal risk, but minimal risk is inadequately justified. I propose an interpretation of minimal risk. I defend the idea that minimal risk should be interpreted according to the risks of daily life. I reject the most prominent defense of daily life, which claims that daily risks are morally relevant because they replace, rather than add to, the risks a child would ordinarily face. Instead, I propose that these risks are part of a reasonable trade-off between personal safety and our ability to pursue meaningful lives. I then examine whose daily life should be captured in the concept of minimal risk. I reject arguments that minimal risk should refer to healthy children or the subjects of the research and propose instead that the referent should be children who are not unduly burdened by their lives. I argue that children are not unduly burdened when they fare well and defend the idea that children fare well when they possess sufficiently high degrees of the substantive goods of childhood. I conclude by analyzing a controversial case study using my interpretation of minimal risk. I draw on this case to argue that my interpretation offers clear guidance for research ethics review and contributes to a determination that is more plausible than its rivals. (shrink)

Ethics applications to conduct research with children who have experienced domestic violence will frequently raise a red flag to ethics committees about the potential for risk and re-traumatization. On the other hand, such sensitive research can enable a hidden, marginalized population to have their voices heard. It can deliver findings about children’s lives that can inform otherwise adult-centric research, policy and practice initiatives. The authors highlight ethical concerns and practical solutions using examples from domestic (...) violence, family law and child abuse research with children. Ethical planning is explored according to methodologies, context and whether the violence has been named. Also discussed are consent procedures, confidentiality and the development of protocols for disclosure, distress, safety and risk assessment, which support ethical and safe research with children. (shrink)

The inclusion of children in research gives rise to a difficult ethical question: What justifies children's research participation and exposure to research risks when they cannot provide informed consent? This question arises out of the tension between the moral requirement to obtain a subject's informed consent for research participation, on the one hand, and the limited capacity of most children to provide informed consent, on the other. Most agree that children's participation in (...) clinical research can be justified. But the ethical justification for exposing children to research risks in the absence of consent remains unclear. One prevalent group of arguments aims to justify children's risk exposure by appealing to the concept of benefit. I call these ‘benefit arguments’. Prominent versions of this argument defend the idea that broadening our understanding of the notion of benefit to include non-medical benefits helps to justify children's research participation. I argue that existing benefit arguments are not persuasive and raise problems with the strategy of appealing to broader notions of benefit to justify children's exposure to research risk. (shrink)

This study ascertained reports of assent (affirmative agreement) and permission (agreement by an adult fully capable of being informed) in 114 children's research articles in 1990 in Child Development (CD), Journal of Consulting and Clinical Psychology (JCCP), Journal of Pediatric Psychology, and Journal of Clinical Child Psychology. Of the research projects, 43% failed to specify permission, and 68.5% failed to specify assent. JCCP reported assent significantly more than CD. Assent was reported significantly more in research (...) class='Hi'>with older children than with younger children. This lack of sensitivity to assent and permission suggests that many authors, reviewers, and editors consider reporting assent and permission unessential. We recommend specifying assent and permission in all manuscripts, highlighting children's research issues in graduate training, and using specific safeguards when conducting research with children. (shrink)

At the outset of an ethnographic inquiry, we navigated national and international resources to search for theoretical and practical guidance on obtaining parents and children’s informed consent/assent. While much theoretical guidance debating ethical issues to children’s participation in research was found, a paucity of published papers offering practical guidance on assent processes and/or visual representations of child assent forms and information sheets was discovered. The purpose of this article is to describe our experiences, both theoretically and practically, (...) of negotiating the process of obtaining informed consent and assent with parents and children for a non-therapeutic qualitative research study. We hope this article instigates a platform for others to explicate their experience and contributes to the construction of a coherent body of knowledge which will clearly delineate important elements that must be considered when negotiating children’s agreement to participate in research. (shrink)

One of the central problems concerning research with children is the delineation of appropriate levels of risk exposure. In the U.S. Code of Federal Regulations, the "minimal risk" concept serves as an anchoring measure for allowable risk. While the regulations sought to promote a balance between scientific advances and the protection of children's vulnerable status, ambiguities in the language of the regulations and the regulatory definition of "minimal risk" have given rise to a great deal of (...) confusion. Research ethics boards and the medical community espouse a multitude of varying opinions regarding the interpretation and application of the federal regulations with more recent research demonstrating an apparent increase in risk without corresponding benefit in pediatric research. Informed by ethical theory, law, and science, this project analyzes the apparent increase in allowable risk, calls for a reassessment of the concept of "minimal risk," and recommends modifications to the federal regulations. (shrink)

The aim of this paper is to investigate how children use their participation in research as a potential transformative social practice in everyday life. The concept of transformative social practice will be discussed in relation to the notion of transformation. Through empirical examples provided by Holly (12) and Oliver (11), the article argues that research processes open up possibilities for understanding ourselves (researchers and participants) in new ways. ‘Life Mapping’ - as dialogical method in research (...) class='Hi'>with children - will be presented and reflected upon as a way for children to develop different understandings of themselves, their families, and everyday life. This emphasizes the connection between the use of child-relevant methodologies and how specific children can bring dialogues from the research process in to play in their everyday lives. Data is drawn from a qualitative study and is a part of a PhD project studying children’s everyday lives with two households as a result of parental divorce. The project involves ten children aged 8- 12 and their parents. (shrink)

This paper is an attempt - and a plea - to get real about the ethics of practising social science 'with children rather than on or for children'. It is written from and in response to a troubling question: why (when I am 'police cleared' and my research is 'ethical' in terms of legality, professional codes of practice and notions of.

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view (...) on the body and vulnerability. It is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

This article discusses the practical implications and ethical dilemmas of ‘other’ adults being present in a research setting where the participant is a child. The article focuses on three key issues in relation to this theme. First, the range of ways that ‘other’ adults (for example, parents or guardians, teachers or youth workers) may become involved in the process of research is discussed. Second, the article considers how the presence of ‘other’ adults may raise ethical challenges, impact on (...) the research process, and ultimately affect the data collected. Finally, suggestions are offered for the range of strategies open to researchers in negotiating the involvement of ‘other’ adults within a research context. (shrink)

This paper is an attempt - and a plea - to get real about the ethics of practising social science 'with children rather than on or for children'. It is written from and in response to a troubling q...

To protect children in research, procedures that are not administered in the medical interests of a child must be restricted. The risk threshold for these procedures is generally measured according to the concept of minimal risk. Minimal risk is often defined according to the risks of “daily life.” But it is not clear whose daily life should serve as the baseline; that is, it is not clear to whom minimal risk should refer. Commentators in research ethics often (...) argue that “minimal risk” should refer to healthy children or the subjects of the research. I argue that neither of these interpretations is successful. I propose a new interpretation in which minimal risk refers to children who are not unduly burdened by their daily lives. I argue that children are not unduly burdened when they fare well, and I defend a substantive goods account of children’s welfare. (shrink)

This comment responds to an article by Range and Cotton (1995) on reporting of parental permission and child assent procedures in published articles for 4 psychology journals. Issue is taken with the assumptions, methodology, interpretations, and implications of listing researchers in the Range and Cotton article. There is no evidence researchers failed in their ethical obligations or that children were put at risk. Reporting permission/assent in publications is not an ethical requirement. Listing researchers as "failing" to do something (...) not part of an ethical code is lamentable. Too many unfortunate implications and problems can be derived from Range and Cotton's analysis and conclusions. (shrink)

Range and Cotton (1995) showed that many of the articles reviewed in their study did not include a line specifying institutional review board-approved procurement of informed parental permission and child assent for child research. Range and Cotton stated that the absence of the line suggests a lack of sensitivity to permission/assent issues, implied that many authors of the articles did not obtain permission/assent, and said those who did but did not report it were camouflaging those who did not. In (...) this article, the logic of these points is refuted, the ethics of the Range and Cotton study are questioned, and its potential divisiveness is lamented. (shrink)

Ethical research with children requires a special concern for their well-being as individuals. Researchers are therefore expected to report problems children experience and to refer children for assistance. This article addresses difficulties that can arise as researchers attempt to meet this obligation in research with low-income ethnic minority children. Potential difficulties include both failure to report and overreporting suspected problems. The role of institutional review boards in researchers' reporting and referring behavior is (...) also discussed. (shrink)

When should listening through observation stand alone? --.

While Philosophy for/with Children (P4wC) provides a better alternative to the usual ‘banking’ model of education, questions have been raised regarding its applicability in non-western contexts. Despite its adherence to the ideals of democratic dialogue, not all members of a Community of Inquiry (COI) will be disposed to participate in the inquiry, not because they are incapable of doing so, but because they are positioned inferiorly within the group thereby affecting their efforts to speak out on topics that (...) are meaningful to them. In this article, I claim that it is essential to integrate positionality in P4wC research/practice. Aside from its role in helping a practitioner/researcher choose the appropriate method and materials that match the unique contexts of children, it also increases one’s awareness of the subtle forms of epistemic injustice that could leak in the COI, as well as the other subtle ways in which children are marginalized. In this regard, a P4wC researcher/practitioner must have a higher degree of sensitivity towards her positionality as this inevitably gets entangled with the positionality of children. I present some ‘areas’ in which the importance of positionality in the COI manifests, namely, restructuring classroom power relations, navigating a multi-ethnic classroom, facilitating meaning-making, and modeling reflective thinking. (shrink)

Social scientists who conduct qualitative research frequently use emotional engagement to gather information about participants’ thoughts, feelings, and behaviours in relation to a particularly research question. When the subject under investigation is related to trauma, listening to, or being exposed to personal accounts of participants’ traumatic experiences can carry a significant emotional cost for researchers. This may place them at risk of secondary trauma. In this article, I examine these issues from the context of my doctoral field (...) class='Hi'>research in South Africa, which focused on intergenerational trauma amongst descendants of victims of apartheid-era gross human rights violations. I reflect on my positionality as both an insider and outsider and feelings of guilt that emanated from my sense of being privileged and an imposter. I also reflect on the emotional turmoil brought about by my engagement with the trauma of participants and their families. I conclude by sharing the lessons I have learnt, and that have enabled me to sustain my scholarly engagement with intergenerational trauma. Ultimately, this article gives insight into, and raises awareness about, the emotional consequences of conducting trauma research. It offers practical suggestions to help researchers navigate the emotional minefield involved in conducting trauma research. (shrink)

Despite having international and national legislative frameworks and policies that guarantee children’s rights and encourage their participation in matters affecting them, consulting children has received scant scholarly attention in the African context. Notwithstanding this state of affairs, it is important to ask whether, in keeping with growing progressive practices, having children as active researchers is a feasible goal to achieve and, if so, how might this be possible. Drawing on Swartz and Nyamnjoh’s framework of research (...) existing along an emancipatory continuum, we argue for practical, methodological interventions to bridge the researcher–researched divide. We show, using four case studies, how giving children a voice – a key feature of emancipatory research – as participants in educational research has the potential to afford them space to co-enact the research and develop their sense of agency. The four case studies were drawn from investigations of lived experiences of orphaned children and conceptions of education quality in South Africa; consulting children about sex and HIV/AIDS education in South Africa, Tanzania and Kenya; a study of a community-based peer education programme in South Africa and language and mathematics skills assessments in a large-scale study. Within each case, we evaluate the extent to which the research methods used aims for and achieves children’s participation and emancipation and offer ways to overcome challenges for adopting emancipatory approaches in the schooling sector from ethical, policy and political perspectives. The article concludes with recommendations for implementing emancipatory methodologies in educational research involving children. (shrink)

There are important ethical issues that must be carefully thought through when undertaking research with children. This paper explores how the context of such issues changes with the individual circumstances of the children involved, particularly when they are marginalised or excluded by wider society. By reflecting on experiences of research with Kampala street children, this paper highlights how participation throughout the research process can both raise and resolve ethical dilemmas. This is (...) illustrated by reflecting on two examples, namely discussing sensitive topics and the dissemination of socio-spatial research findings. In conclusion, the paper demonstrates the importance of ethical sensitivity to the changing situations that arise when conducting research with street children and the importance of incorporating and involving them in both the research process and ethical dilemmas. (shrink)

While Philosophy for/with Children provides a better alternative to the usual ‘banking’ model of education, questions have been raised regarding its applicability in non-western contexts. Despite its adherence to the ideals of democratic dialogue, not all members of a Community of Inquiry will be disposed to participate in the inquiry, not because they are incapable of doing so, but because they are positioned inferiorly within the group thereby affecting their efforts to speak out on topics that are meaningful (...) to them. In this article, I claim that it is essential to integrate positionality in P4wC research/practice. Aside from its role in helping a practitioner/researcher choose the appropriate method and materials that match the unique contexts of children, it also increases one’s awareness of the subtle forms of epistemic injustice that could leak in the COI, as well as the other subtle ways in which children are marginalized. In this regard, a P4wC researcher/practitioner must have a higher degree of sensitivity towards her positionality as this inevitably gets entangled with the positionality of children. I present some ‘areas’ in which the importance of positionality in the COI manifests, namely, restructuring classroom power relations, navigating a multi-ethnic classroom, facilitating meaning-making, and modeling reflective thinking. (shrink)

This paper presents an integrated discussion of methods and ethics by drawing on participatory research with children in Ethiopia and Kenya. It examines the complex social, ethical, practical and methodological dilemmas of research with HIV-affected children, and explores how we confronted some of these dilemmas before, during and after fieldwork. The paper interrogates the role and limitations of ‘global’ ethical standards in childhood research, and the ways in which the researchers’ gender, ethnicity/race, material (...) power, knowledge and insider-outsider position all intersect to affect: (a) the level of children's involvement in the research process; (b) the generation of knowledge about the field; and (c) the negotiation of ethics in collaborative ways. We argue that doing ethical research with HIV-affected children should not be based solely on dominant and de-contextualised understandings of ethics, knowledge and social relations, but should be negotiated reflexively and through dialogue with participants, including the children, their guardians and ‘local’ community members—all with the aim of doing good and avoiding harm in the research process. (shrink)

In a Norwegian study on how children aged 7-12 years cope during a period of serious illness within the family and on their quality of life at this time, several ethical questions became apparent. These were mainly concerned with the vulnerability of children during research, with their ability to make autonomous decisions, and with considerations regarding how to respect their right to confidentiality during the research process. In this article we approach these questions (...) using our experience from this previous study, discussing them within the framework of theories of ethics and relevant research ethical guidelines. Finally, we discuss our experience in the light of the overall purpose of this article: how to deal with the ethical dilemmas that may appear during research involving young children. (shrink)

In this article, I argue for the value of participatory methodologies, in research with children, which aims to privilege their epistemologies and living experiences in relation to the nature of self. Researching self with children raises questions about the mainstream materialist paradigm which holds hegemony over most academic disciplines – and, importantly, over the life worlds of everyday people. Children’s experiences of self, others and the world challenge the dominant materialist paradigm, requiring investigation into (...) other metaphysical models of reality, that may have more explanatory power than materialism. I address this by appealing to a body of scholarship referred to as ‘postmaterialist’. Reauthoring our nature as human beings carries an increasing importance and urgency in the face of current ecological, economical and health crises. I argue that any research, which seeks to facilitate social transformation through everyday people, needs to begin by asking ontological questions about the nature of the self - the subject of experience who holds and reports epistemological authority over their subjective experiences. (shrink)

There are important ethical issues that must be carefully thought through when undertaking research with children. This paper explores how the context of such issues changes with the individual cir...

Poor nutrition habits have been reported in the childcare setting. While the literature advocates the need to carry out ‘Voice of the Child’ research, few studies have explored this methodology with regard to children and food, in particular in the pre-school setting. This article aims to outline the ethical issues raised by a research ethics committee and to discuss the impact of these issues on a study that hoped to determine the food perceptions of children (...) (aged three to four years) within an ongoing nutrition and lifestyle pre-school project in Ireland. Ethical approval was granted for this study but only upon the clarification of two aspects: that only hedonic symbols previously used in the literature could be included in the study; and that parental consent be obtained from both parents of each child. Children were shown food pictures and asked to use the hedonic symbols to answer questions posed to them on the food. Owing to the ethical constraints imposed by the requirement for two-parent consent, seven children, from a potential sample of 85, were eligible to partake in the study. These children did not seem to understand the hedonic symbols recommended for use by the ethics committee, therefore preventing the collection of in-depth qualitative data. The ethical constraints placed on this study impacted on both its design and its methodology and are discussed in relation to national and international ethical guidance and legislation. Future research with children regarding food choice must balance the need for strict ethical standards with the need to explore children’s views on this subject. (shrink)

Children and individuals with developmental disabilities compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit (...) from research by equitable participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy. (shrink)