Volume 24, Issue 12, December 2024, Page 48-51.

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)

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.

This book examines the ethical issues in pediatric medical research. It argues that policies and practices on the participation of children must focus primarily on minimizing risks. It offers specific recommendations to revise Subpart D of the federal regulations to provide greater protection where necessary and remove obstacles that do not provide additional protection but interfere with access. The book is divided into four sections. Section 1 focuses on the issue of access versus protection in pediatric research. Section 2 (...) deals with challenges to regulations. Section 3 discusses the strengths and limits of current regulations, while different case studies are examined in Section 4. (shrink)

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral (...) questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether 'animal nature' is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology. (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)

This paper considers the often-expressed fear that medical research may use children merely as means, and not respect them as ends in themselves – especially insofar as they are deemed less able to consent than adults. The main focus is on large-scale genetic, socio-medical and epidemiological research. The theoretical starting point of the paper is that to be treated as an end in oneself is to be regarded as – and to act as – a participant in cooperative endeavours. (...) This participatory status is certainly connected with individual authority to consent and dissent; and there is no doubt that consent plays an important role when adults participate in many research projects. However, insofar as consent is located within structures of human cooperation, the authority to consent is not a straightforward privilege. Rather, consent is bound up with responsibility for one's choices and commitment to shared terms of cooperation. Given this understanding, it is argued that consent should not be our principal concern when we involve children in research. This is not because of children's (possible) incompetence to consent as such, but rather because children are still learning how to respect and assess the cooperative terms involved in our institutional lives. Instead, our leading concern should be with the terms regulating their involvement in research. Given suitable safeguards, research is one way in which children may learn what it is to bear responsibilities and to act as an end in oneself – that is, to cooperate with others on reasonable terms and for worthy ends. (shrink)

While research on children is supported by many professional guidelines, international declarations and domestic legislation, when it is undertaken on children with no possibility of direct benefit it rests on shaky moral foundations. A number of authors have suggested that research enrolment is in the child's best interests, or that they have a moral duty or societal obligation to participate. However, these arguments are unpersuasive. Rather, I will propose in this paper that research participation by children seems (...) most reasonable when considered as an act of solidarity; a form of identification with, and provision of practical assistance to, those who are less well off. This is an articulation of the view that many children, and their parents, seem to take seriously the suffering of others, and wish to assist in advancing other children's wellbeing. Perhaps, by fostering an environment in which children are encouraged to take solidarity seriously, participation in research which holds out substantial hope of benefit to those less well off would come to be perceived as a behavioural norm rather than an exceptional practice. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines (...) conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Recruitment of healthy children for drugresearch has emerged due in part to several newAmerican laws and policies that have led to asurge in pharmaceutical research involvingchildren-subjects. In this paper, I review theethical and scientific issues and the argumentsin favor and against this new practice.

This article argues that investigators doing developmental and social research with children have, for the most part, failed to acknowledge the inherent implications of their work for children's rights. The impact of these studies upon children's rights occurs at every stage; from hypothesis formulation to hypothesis testing to dissemination of findings. This paper addresses the issue in the context of developmental research on children's ability to report experienced events accurately. This particular research area has generated data (...) that has been extrapolated to legal contexts and created a foundation for assumptions about the credibility of child witnesses. This in turn has had profound effects on children's right to be heard and the weight given to their testimony. The argument is made that there is a need for social scientists to explicitly articulate how their work may impact upon children's rights and what is in fact the social agenda in this regard underlying their research. (shrink)

The U.S. federal regulations require investigators conducting nonbeneficial research to obtain the assent of children who are capable of providing it. Unfortunately, there has been no analysis of which children are capable of assent or even what abilities ground the capacity to give assent. Why should investigators be required to obtain the positive agreement of some children, but not others, before enrolling them in research that does not offer a compensating potential for direct benefit? We argue that (...) the scope of children's research decision making should be based on the principles of respect for autonomy and nonmaleficence. These principles imply that the threshold for assent should be fixed at 14 years of age, and a dissent requirement should be adopted for all children in the context of nonbeneficial research. (shrink)

Young children are prolific question-askers. The growing ubiquity of voice interfaces (e.g., Apple’s Siri, Amazon’s Alexa), as well as the availability of voice input in search fields, now make it possible for children to ask questions via Internet search when they are able to speak clearly, but before they have learned to read and write, typically between 3 and 6 years of age. The prevalence of voice search makes it important to understand children’s changing conceptions of digital (...) devices as a source of information and the role of technology-mediated question-asking in development. While limited research has focused on young children's use of voice interfaces, reviewing two related bodies of literature sheds light on how this use might unfold. This paper brings together studies of how children look for information, and of how they perceive and understand the informational and social roles of technology, drawing on human-computer interaction research. We conclude by highlighting lines of questioning for future work on younger children’s interaction through voice search. (shrink)

Although social scientists have identified diverse behavioral patterns among children from dissimilarly structured families, marketing scholars have progressed little in relating family structure to consumption-related decisions. In particular, the roles played by members of single-mother families—which may include live-in grandparents, mother’s unmarried partner, and step-father with or without step-sibling(s)—may affect children’s influence on consumption-related decisions. For example, to offset a parental authority dynamic introduced by a new stepfather, the work-related constraints imposed on a breadwinning mother, or the imposition (...) of adult-level household responsibilities on children, single-mother families may attend more to their children’s product preferences. -/- Without a profile that includes socio-economic, behavioral, and psychological aspects, efficient and socially responsible marketing to single-mother households is compromised. Relative to dual-parent families, single-mother families tend to have fewer resources and less buying power, children who consume more materialistic and compulsively, and children who more strongly influence decision making for both own-use and family-use products. Timely research would ensure that these and other tendencies now differentiate single-mother from dual-parent families in ways that marketers should address. Hence, our threefold goal is (1) to consolidate and highlight gaps in existing theory applied to studying children’s influence on consumption-related decision making in single-mother families, and (2) to propose a hybrid framework that merges two theories conducive to such research, and (3) to identify promising research propositions for future research. (shrink)

Current UK guidelines regarding clinical research on children permit research that is non-therapeutic from the perspective of that particular child. The guidelines permit research interventions that cause temporary pain, bruises or scars. It is argued here that such research conflicts with the Declaration of Helsinki according to which the interests of the research subject outweigh all other interests. Given this, in the context of clinical research, who is best placed to protect the child from this kind of exploitation? Is (...) it the medical researcher, the child’s parents or the nurse advocate? This article describes the problem, possible responses to it, and closes with a consideration of, and rejection of, a defence of current guidelines that claims moral parity between clinical research and clinical education. (shrink)

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)

From the very beginning of civilization, children are made the subject matter of many social and clinical researches. Due to the vulnerabilities of physical frailty and mental immaturity, children’s interests and rights need to be protected from the risks associated with any kind of research. Recently, there has been increased global concern towards the involvement of children in research for the protection of their rights by the ethical research practice. It emphasizes upon the ongoing nature of ethical (...) considerations that ethical issues need to be considered throughout the research process and even the post research ethical issues are equally significant. The study explores some of the major ethical issues that arise in research involving children during and after the research in terms of the best interests of the children.Bangladesh Journal of Bioethics 2015 Vol.6 (1): 6-10. (shrink)

ABSTRACT A complex problem exists about how to promote the best interests of children as a group through research while protecting the rights and welfare of individual research subjects. The Nuremberg Code forbids studies without consent, eliminating most children as subjects, and the Declaration of Helsinki disallows non-therapeutic research on non-consenting subjects. Both codes are unreasonably restrictive. Another approach is represented by the Council for the International Organizations of Medical Science, the U.S. Federal Research Guidelines, and many other (...) national policies. They allow research ethics committees or institutional review boards to authorize studies with acceptable balances of likely benefits and harms, but neither clarify how to balance them nor explain the meaning of pivotal concepts, like “minimal risk.” Paths to the improvement of balancing or consequentialist approaches include improving standardizing of risk assessment, rejecting crude utilitarianism, identifying and justifying normative or moral judg-ments, and acknowledging extra-regulatory thresholds and deontological or non-negotiable duties to children. (shrink)

The question of whether or not children may be used as subjects in non-therapeutic research projects has generated a great deal of debate and received answers varying from 'no, never' to 'yes, if societal interests are served'. It has been claimed that a Kantian, deontological ethics would necessarily rule out such research, since valid consent would be impossible. The present paper gives a deontological argument for allowing children to be subjects in certain types of research.

There has been growing enthusiasm amongst those who undertake research with children, for the development of participatory and visual research methods. The greater availability and affordability of digital technology (such as digital cameras, tablets and smart phones) has meant that there has been greater scope for digital technology to support participatory research methods, or augment more traditional qualitative research methods. While digital technology provides new opportunities for qualitative researchers, they also come with a series of challenges – some of (...) which have been grappled with by those using more traditional research methods but also some which are new. Our study was undertaken in Victoria, Australia, and used a combination of interviews, focus groups and digital storytelling to bring together two strands of work which have historically occurred separately: work with children experiencing domestic violence and programs for men who use domestic violence. While digital storytelling proved to be an effective method of engaging children and young people in the research, a range of challenging ethical issues emerged. Some of these issues were considered as part of the formal ‘procedural ethics’ process, but additional and more challenging issues relating to anonymity and the complex safety considerations of using of the children’s digital stories within programs for men who use violence and dissemination emerged in practice. It is hoped that sharing our experiences and decision-making will contribute to the knowledge base for others considering engaging in sensitive research using digital technology. (shrink)

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)

A series of studies investigated the capacity of children between the ages of 7 and 12 to give free and informed consent to participation in psychological research. Children were reasonably accurate in describing the purpose of studies, but many did not understand the possible benefits or especially the possible risks of participating. In several studies children's consent was not affected by the knowledge that their parents had given their permission or by the parents saying that they would (...) not be upset if the children refused. In contrast, other studies found that children were much more likely to stop their participation if the experimenter said explicitly that she would not be upset if they stopped. We suggest that experimenters should pay more attention to describing the possible risks and benefits of participation in research, and that they should also make it clearer to children that they are free to stop once they have begun. (shrink)

The paucity of research data to guide current paediatric practice has led to children being termed therapeutic orphans. This difficulty is especially pertinent to research in emergency situations, such as acute resuscitation or critical care, where accepted ethical standards for overall research, have historically created practical difficulties for researchers. The welcome establishment of organisations to support UK paediatric research is helping to ensure safer and more effective medications for children, however as the balance between protection and access at (...) the heart of the paediatric research ethical debate shifts to ever increasing access for researchers to children, it remains crucial to ensure the protection for these vulnerable participants. The fundamental protection for research subjects, namely their full informed consent before any recruitment, is not tenable in true emergency situations and so other approaches are warranted if standards are to be improved by human subjects research in such areas. Proxy, deferred and retrospective consent have all been advocated as solutions to this difficulty and this paper explores the ethical justification for these approaches and their utility in safeguarding children and families in emergency situations when traditional informed consent, as currently defined, cannot be obtained in the necessary time frame to enable research. (shrink)

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and (...) against providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

This paper examines the culture, the dynamics and the financial underpinnings that determine how medical research is being conducted on children in the United States. Children have increasingly become the subject of experiments that offer them no potential direct benefit but expose them to risks of harm and pain. A wide range of such experiments will be examined, including a lethal heartburn drug test, the experimental insertion of a pacemaker, an invasive insulin infusion experiment, and a fenfluramine "violence (...) prediction" experiment. Emphasis, however, is given to psychoactive drug tests because of the inherent ethical and diagnostic problems involved in the absence of any objective, verifiable diagnostic tool. Effort is made to provide readers comprehensive reference sources to evidence-based reports about the serious risks these drugs pose for adults and children so that the reader may judge whether the benefits (if any) outweigh the risks for children. The first ethical issue raised by these experiments is: did the severity of illness in these children justify their exposure to short and long-term risks? The ethics of the experiments will be evaluated by referring to existing codes of medical research ethics-the Nuremberg Code, the Declaration of Helsinki, and the federal Code of Regulations. The thirteen cases presented will demonstrate that children are being used in ever more speculative experiments, often in the absence of a therapeutic intent, but a significant chance for causing harm and / or discomfort. Some of the experiments were designed to explore the mechanisms of pathology and pharmacological interventions, or the response of neurological brain receptors to chemical provocation ("challenge"). Others were designed to test the safety or efficacy of new drugs, even to test these drugs on healthy children who were hypothesized to be "at risk." Children and adolescents have been subjected to "forced dose titration" experiments that induced a spectrum of severe adverse effects, including insomnia, extreme restlessness, agitation, (akathisia) and self-injurious behavior. FDA reports show that suicide is a significant issue in psychotropic drug trials-in pediatric trials the problem is even greater. The paper aims to demonstrate how the enactment of the Better Pharmaceuticals for Children Act (incorporated into the Food and Drug Administration Modernization Act, FDAMA), set in motion a radical shift in public policy by providing huge financial incentives to pharmaceutical companies to test new or patented drugs in children. Federal policy shifted from one aimed at protecting children by setting limits on permissible research risks, to a policy aimed at broadening the inclusion of children as test subjects. It will be shown how the FDA and the Department of Health and Human Services lifted regulatory restrictions to permit research involving greater than minimal risk to be conducted on healthy children, claiming that all children are potentially "at risk" of a future condition. Children were in this way deprived of regulatory protections. An argument will be made that the approval of nontherapeutic, harmful experiments-such as exposure of toddlers to lead poison-under the current gate keeping system raises serious doubts about the sustainability of institutional review boards (IRBs) as protectors of human research subjects. Children, who are precluded from exercising the adult human's right to informed consent, are being exploited as commodities for commercial ends. It is the position of the author that nothing less than the enactment of a federal law mandating a radical overhaul of the current research review system, with independent checks and balances, will provide children the legal protections they need. Ten specific recommendations are offered to protect children from harmful experiments. (shrink)

This article is based on qualitative research conducted in Delhi between May 2019 and October 2019 with children from the Salaam Baalak Trust (SBT) as part of a PhD. Data were collected from 30 children in focus group discussions using participatory methods, followed by semi-structured interviews. As the research was conducted among a vulnerable population (migrant street children), every effort was made to conduct the study ethically, including obtaining informed consent and upholding confidentially and anonymity. Careful consideration (...) was given as to how to tackle sensitive issues should they arise during data collection. The children agreed that the interim findings of the research would be shared with them through SBT. In addition, the researcher considered her position in the research and applied a reflexive approach to address ethical issues as they emerged. This article sets out the ethical principles applied in this research and the process followed to uphold each principle during data collection, taking into account the vulnerability of the group being studied and the context of the study (India). (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)

This paper looks at the issue of consent from children and whether the test of Gillick competency, applied in medical and healthcare practice, ought to extend to participation in research. It is argued that the relatively broad usage of the test of Gillick competency in the medical context should not be considered applicable for use in research. The question of who would and could determine Gillick competency in research raises further concerns relating to the training of the researcher to (...) make such a decision as well as to the obvious issue of the researcher’s personal interest in the project and possibility of benefiting from the outcome. These could affect the judgment of Gillick competency if the researcher is charged with making this decision. The above notwithstanding, there are two exceptional research situations in which Gillick competency might be legitimately applied: when the research is likely to generate significant advantages for the participants while exposing them to relatively minor risks, and when it is likely to generate great societal benefit, pose minimal risks for the participants and yet raise parental objection. In both cases, to ensure that autonomy is genuinely respected and to protect against personal interest, Gillick competency should be assessed by an individual who has no interest or involvement in the research. (shrink)

Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention (...) as such. It has been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously. (shrink)

Video ethics in educational research involving children is a recent topic that has arisen since the increase in the use of visual mediums in research especially with the development of new and ubiquitous internet technologies and social media. This paper emerged as an expressed concerned by a group of scholars associated with the new Video Journal of Education and Pedagogy that was established in 2016. The paper is the result of a collective writing process over a period of a (...) few months that discusses visual studies in education and visual ethics in relation to qualitative research in education, and as it applies to children. The article also uses the newly established convention of open review, publishing the results with the paper. (shrink)

We take a fresh look at emotion recognition in autistic children, by testing their recognition of three different emotions (happy, sad, and surprise). The interest in selecting these is that whereas the first two are typical “simple” emotions (caused by situations), the third is typically a “cognitive” emotion (caused by beliefs). Because subjects with autism have clear difficulties in understanding beliefs, we predicted they would show more difficulty in recognising surprise. In contrast, as they have no difficulty in understanding (...) situations as causes of emotion, we predicted they would not show deficits in recognising happy and sad. These predictions were borne out, in a comparison with a group of normal children and in a group of subjects with mental handicap. This result shows the importance of fine-grain analysis in emotion-recognition tasks, and is discussed in relation to affective and theory of mind models of autism. (shrink)

Objective: The objective of the current study was to maximise the amount of information children and adolescents understand about the risks and benefits associated with participation in a biomedical research study.Design: Participants were presented with one of six hypothetical research protocols describing how to fix a fractured thigh using either a “standard” cast or “new” pins procedure. Risks and benefits associated with each of the treatment options were manipulated so that for each one of the six protocols there was (...) either a correct or ambiguous choice.Participants and setting: Two hundred and fifty one children, ages 6–15 , and 237 adults were interviewed while waiting for a clinic appointment at the Hospital for Sick Children.Results: Using standardised procedures and questionnaires, it was determined that most participants, regardless of age group, were able to understand the basic purpose and procedures involved in the research, and most were able to choose the “correct” operation. The younger children, however, showed an overall preference for a cast operation, whereas the older participants were more likely to choose the pins.Conclusions: By creating age appropriate modules of information, children as young as six years can understand potentially difficult and complex concepts such as the risks and benefits associated with participation in biomedical research. It appears, however, that different criteria were used for treatment preference, regardless of associated risks; older participants tended to opt for mobility whereas younger participants stayed with the more familiar cast operation. (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)

The practical and ethical issues associated with obtaining informed consent from children and young people living in residential state care for their participation in a research study are explored in this paper. Research involving the participation of these young people has received comparatively limited attention in the social sciences: this is due to several reasons including the challenging methodological and ethical issues associated with undertaking such research. These can be categorized as the practical issues of gaining direct contact with (...) these young people through gaining the consent of relevant gatekeepers and the process of gaining a favourable opinion from a research ethics committee. Whilst the principles of clarity and consistency of practice are key elements in the process of accessing consent to participate in research, flexibility and imagination are also important skills for the researcher when developing the appropriate protocols for research in an area of social policy which can be methodologically and ethically complex. (shrink)

In order for children to receive the best possible medical treatment, it is essential that research is conducted to discover safe and effective interventions and dosages. This article focuses on the legal and ethical implications of recruiting into health-care research minors who are not competent to consent. It considers the role played by best interests in obtaining valid parental consent for the participation of children in research, both at common law and under the Regulations that govern clinical trials (...) of medicinal products. In doing so it questions the legality of parental consent to children's involvement in research, and identifies some inconsistencies in parental understandings of best interests in relation to medical research and treatment. (shrink)

In clinical mental health research with children, both child and parent are essential members of the research team. The 3 R's of parent/child team membership are respect, rapport, and recognition. Respect and recognition include fair reimbursement for time, expense, and inconvenience, but the most important compensation for many families is the appreciation of the other team members for their sacrifice and cooperation. Reimbursement, although honoring the principles of justice and respect for persons, raises difficult issues about appropriate amount, particularly (...) in research involving children. The 3 R's are supported by the investigator 5 A's: attitude, adaptability, availability, attachment, and appreciation. Although the principles seem clear in the abstract, implementation encounters many practical problems. Perhaps the most difficult of these is determining the appropriate amount of compensation that avoids undue inducement but not at the expense of the 3 R's and 5 A's. (shrink)

Since the mid-1980s many schools in predominantly white areas have taken active steps to counter racism and ethnocentrism and raise awareness of Britain's ethnic diversity through curriculum development. This paper is primarily concerned with the ethical issues raised by research into such initiatives at primary school level. We begin by alluding very briefly to the shortcomings of extant research into children's prejudice, noting that some studies can be criticised for the unwitting reinforcement of stereotypes. We move on to examine (...) the ethical and methodological considerations which have underpinned our own work in this area, focusing on a recent investigation into children's understanding of Jewish culture and identity. The techniques employed to probe the children's beliefs and attitudes and challenge their taken-for-granted assumptions are described at length, together with the ethical dilemmas addressed during the course of the research. In the second part of the paper, we focus on issues raised by our own curriculum development work in anti-racist and multicultural education in 'all white' schools. We draw extensively on a recent case-study of 10 and 11 year-olds' responses to a teaching programme which aimed to counter stereotypical images both of developing countries and Islam. (shrink)

This commentary draws on the thoughtful contemplation and innovative procedures described in the special section articles as well as current professional codes and federal regulations to highlight ethical practices and paradoxes of deception research involving children. The discussion is organized around 4 key decision points for the conduct of responsible deception research involving children: (a) evaluating the scientific validity and social value of deception research within the context of alternative methodologies, (b) avoiding and minimizing experimental risk, (c) the (...) use of child assent procedures as questionable ethical safeguards, and (d) debriefing as both remedy and risk. (shrink)

Background Central to the involvement of children in health research is the notion of risk. In this paper we present one of the factors, a matter of trust, that shaped Canadian parents' and children's perceptions and assessments of risk in child health research. Participants and methods Part of a larger qualitative research study, 82 parents took part an in-depth qualitative interview, with 51 parents having children who had participated in health research and 31 having children with (...) no research history. 51 children ranging from 6 to 19 years of age were also interviewed, with 28 having a history of participation in child health research and 23 having no history. Children also took part in 3 focus groups interviews. Themes emerged through a grounded theory analysis of coded interview transcripts. Findings The presence or absence of trust was not only perceived by parents and children as a contributing factor to involving children in health research, but also shaped their perceptions and assessments of risk. Three interrelated subthemes identified were: (1) relationships of trust; (2) placing trust in symbols of authority; and (3) the continuum of trust. Conclusions Our study reinforces that trust is an important factor when parents assess risk in child health research and shows that children use the language of trust in relation to risk. More discussion regarding trust in training researchers is warranted given the trust in researchers and institutions evident in this study. We also recommend further study of the continuum of trust in child health research. (shrink)

A complex network of ethico‐legal rules makes it difficult for health researchers in South Africa to lawfully recruit adolescents to the kinds of sensitive studies where it may be ethically appropriate to proceed without notifying parents or obtaining parental consent. This article responds to a recent proposal to amend the blanket requirement for mandatory parental consent presently contained in section 71 the South African National Health Act 61 of 2003 [NHA]. The proposed amendment is intended to bring the NHA into (...) alignment with South Africa's 2015 Department of Health Guidelines on Ethics in Health Research by permitting greater flexibility for a health research ethics committee to waive parental consent, and permit adolescents to consent independently. A lacuna in this proposal is highlighted with reference to the requirements of South Africa's Protection of Personal Information Act 4 of 2013 [POPIA]: Even if the NHA is amended as proposed, the goal of aligning South African law with prevailing ethics norms in South Africa would not necessarily be attained, as parental consent may still be required by POPIA. This article investigates whether this goal (of aligning the law with ethics) can be attained in a way that is compliant with POPIA. It is concluded that this is indeed possible in a number of ways, and that the best way to attain this goal is by requesting the South African Information Regulator to issue a guidance note to the effect that all health research projects that are approved by institutional health research ethics committees are to be regarded as being in the public interest, which would qualify such health research projects to be exempted from POPIA's consent requirements. (shrink)

An authoritative, interdisciplinary approach to the field of biomedical and behavioural research with children encompassing science, medicine, child psychology, ethics, and law.

:To what extent, if any, should minors have a say about whether they participate in research that offers them no prospect of direct benefit? This article addresses this question as it pertains to minors who cannot understand enough about what their participation would involve to make an autonomous choice, but can comprehend enough to have and express opinions about participating. The first aim is to defend David Wendler and Seema Shah’s claim that minors who meet this description should not be (...) offered a choice about whether they participate. The second aim is to show, contra Wendler and Shah, that the principle of nonmaleficence requires more with respect to giving these minors a say than merely respecting their dissent. Additionally, it requires that investigators obtain affirmation of their non-dissent. This addresses intuitive concerns about denying children a choice, while steering clear of the problems that arise with allowing them one. (shrink)

During the preschool years, the socio-emotional responses children receive from interactions with teachers are incorporated into their own social behaviors. This is one of the key ways in which children acquire social and emotional skills. Based on field studies, it can be found that this learning process is not simple imitation of children, but of a more complex context of group interaction. To further clarify the impact of kindergarten teachers’ emotion on the sociometric status and behavior of (...) 3–5 year-old children in their classes, the researchers chose a Montessori mixed-age kindergarten in Beijing as the field site and observed five classes within the kindergarten over a 2-month period in this ethnographic case study. The study found that the power gap between teacher and pupil spreads rapidly to all children in the classroom as a result of the teacher’s emotions, and even stimulates power stratification within the children. In addition, there are differences in the social behaviors between the children of different levels of power. As preschool children are in a critical developmental window when social knowledge is being accumulated and social skills are being acquired, using power relations within the kindergarten classroom as an entry point to analyze the impact of teachers’ emotions on children’s social behavior provides a new breakthrough for the professional development of early childhood education and the better achievement of educational goals. (shrink)

The ability to improve diagnosis and refine prognosis in children with acute leukaemia is improving steadily. A growing number of tests can and are being performed on leukaemic cells. These include surface-marker analysis, DNA content, cytogenetics and studies of gene rearrangements. Increasingly large bone-marrow samples, now usually obtained under general anaesthesia, are required to make secure diagnoses. Ethical issues arise from three major areas. 1) Current research on leukaemia cells requested by the Medical Research Council is considered by local (...) research ethics committees, but parents are not regularly given detailed information about or asked specifically to consent to such research; 2) substantial quantities of excess cells are stored indefinitely. This archive of stored material is a valuable resource for research but there has been little consideration of the ethical issues which arise from this practice, and 3) there is a potential for pressure to obtain increasingly large samples. 'Creeping growth' in sample size is likely to continue unless ethics committees consider future research proposals in more detail. These issues deserve attention in order that worthwhile research and its publication are not impeded for want of ethical consideration. The implications extend beyond the field of childhood leukaemia. (shrink)

This article studies perceptual differences of three social robots by elementary school children of ages 6–13 years at research fairs. The autonomous humanoid robot Pepper, an advanced social robot primarily designed as a personal assistant with movement and mobility, is compared to the teleoperated AV1 robot—designed to help elementary school children who cannot attend school to have a telepresence through the robot—and the flowerpot robot Tessa, used in the eWare system as an avatar for a home sensor system (...) and dedicated to people with dementia living alone. These three robots were shown at the Norwegian national research fair, held in every major Norwegian city annually, where children were able to interact with the robots. Our analysis is based on quantitative survey data of the school children concerning the robots and qualitative discussions with them. By comparing three different types of social robots, we found that presence can be differently understood and conceptualized with different robots, especially relating to their function and “aliveness.” Additionally, we found a strong difference when relating robots to personal relations to one’s own grandparents versus older adults in general. We found children’s perceptions of robots to be relatively positive, curious and exploratory and that they were quite reflective on their own grandparent having a robot. (shrink)

Children’s ability to understand irony is believed to be acquired late compared to other pragmatic skills. To explore this assertion, this article presents a review of four decades of research, to determine the age at which children actually do become capable of understanding ironic utterances, and what the crucial influencing factors are. As this systematic examination of the state of research shows, children do indeed seem to gain an understanding of irony later than other forms of non-literal (...) language. In seeking an explanation for this finding, this article discusses the methodological orientation of previous research. It might be that the predominant use of offline methods, especially metalinguistic judgment tasks, paints a somewhat distorted picture of children’s irony comprehension. The article therefore argues for the use of eye-tracking, and a re-examination of the thesis of late acquisition of irony comprehension in children in the near future. (shrink)

The existing ethico-legal regulation of adolescent children's participation in health research in South Africa is currently unclear. The article interrogates the existing framework governing children's consent to research participation, with specific emphasis on discrepancies in consent norms in law and ethical guidelines. Against the backdrop of the constitutional directive that requires that a child's best interests are of paramount importance in every matter concerning the child, the article assesses whether sufficient consideration is given to children's evolving maturity (...) and capacities when consent to their participation in health research is sought. The article provides specific recommendations and proposes a legislative change to consent provisions in the National Health Act 61 of 2003 in order to address the existing lacunae and to align the framework with constitutional imperatives and international fundamental rights considerations. (shrink)

The United Nations Convention on the Rights of the Child sets out the rights to which all children should have access. Included in the Convention is children’s right to participate and have a say in matters affecting them. This right is equally applicable within a research context as it is in children’s everyday lives. This desk-top study reviews published ethics guidelines and university ethics documents associated with research involving children in school contexts, to determine the presence (...) of children’s participation rights. It draws attention to how growing understandings of children’s participation rights, and the ethical issues associated with these, are inadequately encompassed within ethics guidelines and documents. (shrink)

As countries around the world work to restrict unhealthy food and beverage marketing to children, the U.S. remains reliant on industry-self regulation. The First Amendment’s protection for commercial speech and previous gutting of the Federal Trade Commission’s authority pose barriers to restricting food marketing to children. However, false, unfair, and deceptive acts and practices remain subject to regulation and provide an avenue to address marketing to young children, modern practices that have evaded regulation, and gaps in the (...) food and beverage industry’s self-regulatory approach. (shrink)

Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. (...) Methods An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)