Closing the gaps: consent and preoperative assessment for children and young people
Editorial
Hugo Wellesley, Simon P. Courtman
British Journal of Anaesthesia, 15 April 2024
Summary
The changing ethical and legal landscape in the UK means that anaesthetists should routinely be discussing the risk of death during the consent process. To do this effectively means expanding anaesthetic preassessment services for children and young people, something that has been recognised as a priority, but which still needs investment and an appreciation of its value at the trust level.

Consent and assent in paediatric practice: it’s the conversation that matters
Viewpoint
Hugh T Davies, Jenny Preston
Archives of Disease in Childhood, 4 April 2024
Excerpt
In paediatric medical research, across jurisdictions, parental consent and the assent of their child will usually come from a shared conversation between the researcher and family. This is how a study is introduced, information delivered, uncertainties addressed and understanding confirmed. Evidence indicates the crucial importance of the dialogue1 yet it currently goes unguided, undocumented, and often unchecked as review and research design continue to focus on the Participant Information Sheets (PIS).2 We propose that it’s time to move our focus on to this conversation to help families make their decision and in this viewpoint we suggest how this can be realised working within the constraints that researchers face. We address consent to research, but would contend that this idea has equal applicability in clinical practice…

From vulnerable subjects to research partners: a critical policy analysis of biomedical research ethics guidelines and regulations
Research Article
Maria Cristina Murano
Research Ethics, 29 March 2024
Open Access
Abstract
Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.

Navigating Theoretical, Methodological, and Ethical Interdependences in Researching Children
Book Chapter
Chikezie E. Uzuegbunam
Children and Young People’s Digital Lifeworlds, 27 March 2024; pp 55–75
Abstract
This chapter discusses the theoretical, methodological, and ethical approaches to conducting research with children in specific, local contexts. It is a journey from negotiating theories and methodological decision-making to data collection, while highlighting the various processes and challenges involved in negotiating access to the actual participants used in both the focus groups and the surveys conducted. There is a conscious and deliberate decision to foreground the entire research on a child-centred approach, from theory, methodology, and ethics to analyses, making all of these components interdependent. Due to contextual differences and the nascent nature of digital media and youth research in Nigeria, conducting research with children and young people in such contexts can present unique ethical and methodological challenges. Such dilemmas dealt with include adult–child power relationships, gendered and group dynamics, problems of language and cognition, techno-shame, shy and assertive participants, the challenges of conducting fieldwork in school settings, and absentee participants.

Reconciling Children’s Best Interests and Right to be Heard
Hege Stein Helland
The International Journal of Children’s Rights, 6 March 2024
Abstract
This article explores the tension between the child’s best interests principle and children’s participation and examines the inherent challenges and different approaches to reconcile the dilemma in law and practice: how can children’s best interests be reconciled with their right to be heard? By exploring different systems’ institutional approaches and empirical ability to implement and honour children’s right to participation in national contexts, this article reviews the literature and suggests a framework for understanding participation through a lens of a global typology of child protection systems. Drawing on the conceptual and empirical reviews and elements from the deliberative ideal for decision-making, the article concludes by drawing up a sketch for a best interest model for meaningful, respectful and successful participation with global applicability. The model aims to enhance children’s citizenship and legitimacy of decision-making in child protection.

[Key considerations in the process of assent in children and adolescents: an integrative review]
Vega Vega P, Miranda Castillo C, Vargas Celis I
Revista Chilena de Pediatria, 1 February 2024; 95(1) pp 91-106
Abstract
The participation of children and adolescents in research requires bioethical measures to safeguard their autonomy and well-being through the application of the informed consent process.
Objective
To critically analyze the factors involved in the process of assent/consent in children and adolescents in research.
Methodology
Integrative review of scientific evidence carried out between April and June 2023, from manuscripts published between 2014 and 2023 in Web of Science, PubMed, CUIDEN, and CINAHL databases, using the descriptors Process Assessment OR Assent AND Informed Consent AND Bioethics AND Minors OR Child OR Children AND adolescent OR teenage AND Pediatrics AND Research. Twenty primary articles were found, and the results were subjected to content analysis.
Result
Three categories were identified: shared consent/assent; child-specific factors for giving assent (age of the child to give assent and autonomy of the child to give assent), and key aspects of the assent process (assent form format; assent form content, and context for applying the assent process).
Conclusions
The assent process is a key tool for legal and ethical compliance with the rights of children and adolescents in clinical trial participation. In addition to favoring participation in informed decision-making together with the parents, it is also an instance where the participant’s competencies, capacity for understanding, and autonomy are valued.

Editor’s note: This is a Spanish language publication.