Children and bioethics: clarifying consent and assent in medical and research settings.

INTRODUCTION: The concept of consent in the pediatric setting is complex and confusing. Clinicians and researchers want to know whose consent they should obtain, when a child can provide independent consent and how that is determined. The aim of this article is to establish what produces the justification to proceed with medical or research interventions involving children and the role of consent in that. I clarify concepts such as consent, assent, capacity and competence. SOURCE OF DATA: Literature review. AREAS OF AGREEMENT: Engaging with children and involving them in decisions about matters that affect them is a good thing. AREAS OF CONTROVERSY: The role of competence or capacity and the question of when a child can provide sole consent. GROWING POINTS: Flawed assumptions around competence/capacity. AREAS FOR DEVELOPING RESEARCH: An account of children's well-being that accommodates children's interests during the transition to adulthood.

Telling the truth to seriously ill children: Considering children's interests when parents veto telling the truth.

How should clinicians respond when parents will not allow their child to know the truth about their medical condition and treatment? There is wide consensus amongst clinicians and ethicists that children should be given "honest" information delivered in a developmentally appropriate manner. However, the basis in ethical theory is not clear, especially for pre-adolescents. These children are old enough to understand some information, but are not yet "mature minors" capable of making their own health care decisions. We take the position that thinking in terms of a child's "right to know" is not the most helpful in dealing with the ethical complexity of these situations. We propose that questions of truth-telling are best addressed in terms of how a child's interests are promoted or set back by being told the truth. Our first step is to give an account of the concept of children's interests in general. Then we relate that account specifically to truth-telling. In doing so, we use a relatively straightforward hypothetical but realistic case, in order to illustrate how ethical deliberation using interests would proceed. The case is not intended to be particularly contentious or difficult, so that the focus is on the nature of the ethical reasoning, rather than any complexities of the case.

Telling the Truth to Child Cancer Patients in COVID-19 Times.

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children's cancer care, and specifically bone marrow transplant (BMT), we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children (aged 5-12) we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information.

'Operating is the easy part': Surgeons' decision-making processes and responses to parental requests for elective paediatric appearance-altering facial surgery.

Some parents request elective appearance-altering facial surgery for their children for cosmetic, psychological and/or social reasons. These operations have attracted controversy in the bioethics literature. They are also the subject of professional guidance documents internationally, which leave much to individual practitioners' discretion. Despite their controversial nature, very little is known about surgeons' practices and decision-making processes regarding these operations. Individual semi-structured interviews were conducted by 22 plastic surgeons and oral and maxillofacial surgeons in Australia to explore their descriptions of the types of parental requests they receive for these operations, their decision-making processes and their responses to these requests. Interviews were audio-recorded, transcribed and analysed using inductive content analysis. Surgeons reported parents often request these operations to alleviate or prevent teasing and associated psychosocial distress. However, surgeons expressed concern some parents may be requesting surgery to further their own interests, rather than their child's. Surgeons reported considering multiple factors when making decisions about the ethical justifiability of facilitating these parental requests, including children's wishes about surgery, the severity of the facial difference, the child's growth stage and parents' reasons for requesting. Although most surgeons appeared comfortable denying parental requests when they believe surgery is not in the child's best interests, some indicated they will acquiesce if parents persist. This study provides insights into surgeons' practices and decision-making processes regarding elective paediatric appearance-altering facial surgery requested by parents. It also highlights implications for clinical practice and education, and identifies areas warranting further research.

Telling the truth to young children: Ethical reasons for information disclosure in paediatrics.

When parents ask doctors not to disclose certain information to a child, doctors are challenged to articulate ethical reasons for giving information to children. This paper maps out the professional and legal landscape in which information-giving to children is taking place and identifies the key ethical arguments that have been made for disclosure of information to the child patient. We focus on pre-adolescent children, who have not reached a developmental stage that would see them regarded as 'mature minors'. While doctors can be relatively certain that professional and legal requirements will endorse their disclosure of information to the 'mature minor', guidelines are not clear on information-giving to pre-adolescents (immature minors). We identify six ethical reasons for telling the truth to younger children. It is noteworthy that there are good reasons to tell the truth to children, which are independent of any question of the child's capacity to be involved in decision-making.

The zone of parental discretion and the complexity of paediatrics: A response to Alderson.

Alderson critiques our recent book on the basis that it overlooks children's own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child's medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians' concerns in practice: What should a clinician do when he or she thinks that parents are choosing a treatment pathway that does not serve the child's best interests? Alderson's work, in contrast, focuses on the much broader issue of children's role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches, investigating a range of different focal problems in order to further understanding. The zone of parental discretion is not incompatible with valuing children's rights and views; its focus is a different element of a complex whole.

"I Don't See That as a Medical Problem": Clinicians' Attitudes and Responses to Requests for Cosmetic Genital Surgery by Adolescents.

Labiaplasty is a form of genital surgery to reduce large or protruding labia minora. Internationally, the rates of this surgery among women and girls is increasing and is viewed as a worrying trend. Currently, the main clinical strategy is to reassure adolescents that they are normal by talking about the variation of labia size and appearance and showing pictures demonstrating the wide range of normal female genital appearance. For the most part, policy documents recommend against labiaplasty in adolescents, claiming that it is medically non-essential surgery. In this paper, we contrast findings from our interviews with clinicians with the existing literature and policy documents and we point out areas needing more thought. This is qualitative research using semi-structured interviews. We set out to find out on what basis clinicians decide how to treat or manage adolescent patients seeking labiaplasty. We interviewed clinicians who are likely to be approached by under-eighteens requesting labiaplasty. We use interpretive content analysis and thematic analysis to analyse the data. Our findings support the emphasis on education and reassurance as the first step for all patients, but other issues that have not figured previously in the literature that would alter clinical strategies for managing patients emerge as well. Key findings are that reassurance does not always work and that the distinction between functional and appearance concerns is not a solid foundation in itself for deciding whether surgery is ethically appropriate. We conclude that the distinction between functional and appearance concerns is not ethically relevant. It is open to different interpretations and is not regarded by all clinicians as the definitive factor in relation to surgery. The focus of clinicians should be on relieving distress whatever the cause. Appearance reasons may sometimes justify surgery but, also, functional reasons may sometimes not be sufficient justification for surgery.

Body Dysmorphic Disorder: Contraindication or Ethical Justification for Female Genital Cosmetic Surgery in Adolescents.

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery (specifically labioplasty) for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are (1) that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and (2) even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery will fail in its aims. In this article, we challenge, in an evidence-based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion.

Deception of children in research.

The aim of this article is to draw attention to an under-recognised but ethically important phenomenon involving the deception of children in research. The type of deception we are referring to is not planned deception that is part of the research design. Instead it is deception that occurs in individual cases where parents ask researchers not to reveal something about the research to their child. Our focus is children who do not have ultimate decisional authority--children around the ages of 7-14 years old who may have the cognitive capacity to understand but not to consent for themselves; children whose agreement is required but not sufficient to authorise research. We provide three illustrative scenarios for analysis. Then, we identify circumstances in which non-disclosure might be justified and set out reasons why providing information to non-competent children is ethically required. On this basis, we argue that non-planned deception requested by parents is very unlikely to be ethically acceptable. Finally, we recommend that guidelines should (a) require researchers to consider what to do if parents do not want to disclose information to a child and (b) clarify that the most ethical response is to simply not include that child in the research.

Ethical questions must be considered for electronic health records.

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing.

The ethics of paediatric research.

Paediatric research is essential for improving health outcomes of children. Waiting for adult studies before conducting paediatric studies will prolong the denial of effective treatment for children. If we rely on information from adult studies rather than conducting studies with children, we risk causing harm to children. In this paper, we identify and examine ethical issues unique to conducting research with children. These include the function and the value of a child's assent and the criteria that should guide a proxy in making decisions about a child's involvement in research, offering payment to children for research participation and acceptable levels of risk for paediatric research. Justice demands that children not be denied the benefits of research, and it is the role of the paediatric medical community to advocate not only for more research for children but also to ensure that the research conducted is of the highest quality.