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This study determined the knowledge, attitudes, and behaviors of pediatricians and pediatric residents regarding issues of ethics, professional education, clinical ethical principles, and consent they encounter in health service delivery. Participants in the study were 134 pediatricians and pediatric residents from three hospitals in Ankara, Turkey. Participants were asked questions regarding their sociodemographic characteristics, their knowledge and views of ethics and ethical education, whether they had ever encountered an ethical problem, their beliefs about obtaining consent from pediatric patients and their families, and case-based questions. All data were collected and evaluated. Of the participants in the study, 82 (61.2%) were residents, 41 (30.6%) were pediatricians, and 11 (8.2%) were faculty lecturers. The data revealed that 10% of the pediatricians and pediatric residents received ethical education, apart from medical ethics/deontology education at medical school, and 90.3% required further education on children and ethical problems. It was determined that 89% of residents and 78% of pediatricians needed help with the ethical problems they encountered during the diagnostic and treatment processes. Overall, 65.7% of the participants stated that the ethical problems they encountered affected the efficiency of health service delivery. It was observed that residents were more affected by ethical issues than pediatricians were. The present study revealed that pediatric residents and pediatricians need ethics education and there is a need to establish ethics counseling centers in hospitals. There is also a need for further studies in pediatrics and ethics. [ABSTRACT FROM AUTHOR]

Objective: In English paediatric practice, English law requires that parents and clinicians agree the 'best interests' of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature.Design: We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically.Results: Parents and clinicians indicated differences in their approaches to deciding the child's best interests. These were reconciled when parents responded positively to clinicians' efforts to help parents agree with the clinicians' view of the child's best interests. Notably, protracted disagreements about a child's best interests in non-treatment decisions were resolved when parents' views were affected by witnessing their child's physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable.Conclusions: Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child's deterioration and avoidance of the courts risks giving insufficient weight to the child's interests. New approaches to decision making are needed. [ABSTRACT FROM AUTHOR]

The article offers information on the panel discussion on "Regulatory and ethical issues in clinical research in children" held in collaboration with Indian Academy of Pediatrics and the Federation of Obstetrics and Gynecological Societies of India in April 2017 in Mumbai, India. Topics discussed include clinical pharmacology for maternal and child health; new drug development and clinical trials in children; and pediatric clinical research and drug development by pharmaceutical industry.

In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research-care context. [ABSTRACT FROM AUTHOR]

“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond a general concern for the patient's seemingly excessive burden. This article brings the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties. [ABSTRACT FROM AUTHOR]

A range of interventions in dying patients can improve both the possibility of successful organ donation and the likely long-term success of transplantation. The ethical and legal issues surrounding such interventions, which most frequently occur in the context of donation after circulatory determination of death, are complex, controversial and many remain unresolved. This is true with adults, but even more so with children, where the issue of organ donation and premortem interventions to facilitate it, are highly sensitive. Essentially, such interventions are being undertaken in dying children who cannot medically benefit from them, though arguments have been advanced that becoming a donor might be in a child's extended best interest. However, certain interventions carry a potential risk, although small, of direct harm and of course overall objections to child donation after circulatory determination of death per se are still expressed in the literature. But, unlike the case in critically ill adults, those giving permission for such interventions are normally able to fully participate in decision-making, and indeed to consent, to both donation and premortem interventions. We review the issue of the use of premortem interventions in dying children to facilitate organ donation, including decision-making and ethical justification. Individual interventions are then considered, including an ethical analyse of their use. Finally, we recommend an approach using a combination of welfare checklist strategy, coupled with the establishment of an agreed zone of parental discretion about individual interventions which might be used in dying children to increase the possibility of successful organ donation. [ABSTRACT FROM AUTHOR]

The survival of critically ill neonates has increased, which has led to professional caregivers of these babies to face ethical decisions about it. This paper outlines the aim of characterizing ethical situations that caregivers face, the criterion they use and how decisions on ethical dilemmas are taken by Pediatricians and Neonatologists. Methodology: A cross-sectional study was performed. 87 neonatologists and/or Pediatricians, who work in neonatal care units in Chia and Bogota between October 1 of 2014 and January 31 of 2015, were invited to participate and answer a characterization survey voluntarily, but only 45 professionals (51.7%) agreed to take part in it. An exploratory data analysis was performed by using descriptive statistics. Results: Professionals who answered the survey, 100.0% of them has faced ethical problems, 60.0% of them has received some training in bioethics, 33.0% relies on ethics committee, 98.0% has a viability limit to start reanimating and 93.0% has limited the therapeutic effort; 98.0% includes parents in decisions and registers the decision in the medical record. Conclusions: Ethical conflicts in the neonatal care unit are frequent. Most professionals have training and an ethics committee for decision-making. Among the specialists there are heterogeneous views on certain ethical problems in neonatal care units. [Agudelo-Pérez SI, Maldonado- Calderón MJ, Pinzón-Flórez C, Pérez-Barreto C, Mazzantidi- Ruggiero M. Characterization of making ethical decisions in neonatal care units by pediatricians and neonatologists. [ABSTRACT FROM AUTHOR]

Due to technological advances, an increasing number of infants and children are surviving with multi-organ system dysfunction, and some are reaching end-stage renal disease (ESRD). Many have quite limited life expectancies and may not be eligible for kidney transplantation but families request dialysis as alternative. In developed countries where resources are available there is often uncertainty by the medical team as to what should be done. After encountering several of these scenarios, we developed an ethical decision-making framework for the appropriate choice of conservative care or renal replacement therapy in infants and children with ESRD. The framework is a practical tool to help determine if the burdens of dialysis would outweigh the benefits for a particular patient and family. It is based on the four topics approach of medical considerations, quality-of-life determinants, patient and family preferences and contextual features tailored to pediatric ESRD. In this article we discuss the basis of the criteria, provide a practical framework to guide these difficult conversations, and illustrate use of the framework with a case example. While further research is needed, through this approach we hope to reduce the moral distress of care providers and staff as well as potential conflict with the family in these complex decision-making situations. [ABSTRACT FROM AUTHOR]

Background: Medical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources. Ethical oversight is essential for safe, appropriate research conduct. Informed consent by the parent or legal guardian is usually required for child research participation, but obtaining consent may be challenging in paediatric critical care research. Local regulations may also impede important research if overly restrictive. By narratively synthesising and contextualising the results of a comprehensive literature review, this paper describes ethical principles and regulations; potential barriers to obtaining prospective informed consent; and consent options in the context of paediatric critical care research in South Africa.Discussion: Voluntary prospective informed consent from a parent or legal guardian is a statutory requirement for child research participation in South Africa. However, parents of critically ill or injured children might be incapable of or unwilling to provide the level of consent required to uphold the ethical principle of autonomy. In emergency care research it may not be practical to obtain consent when urgent action is required. Therapeutic misconceptions and sociocultural and language issues are also barriers to obtaining valid consent. Alternative consent options for paediatric critical care research include a waiver or deferred consent for minimal risk and/or emergency research, whilst prospective informed consent is appropriate for randomised trials of novel therapies or devices. We propose that parents or legal guardians of critically ill or injured children should only be approached to consent for their child's participation in clinical research when it is ethically justifiable and in the best interests of both child participant and parent. Where appropriate, alternatives to prospective informed consent should be considered to ensure that important paediatric critical care research can be undertaken in South Africa, whilst being cognisant of research risk. This document could provide a basis for debate on consent options in paediatric critical care research and contribute to efforts to advocate for South African law reform. [ABSTRACT FROM AUTHOR]

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child's medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child's life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child's life but rather some other aspect of the child's well-being. [ABSTRACT FROM AUTHOR]

The Symposium on "The Interface of Child Rights and Pediatric Bioethics in the Clinical Setting" brought together a diverse group of pediatric bioethicists and child rights advocates to explore how the junction of these disciplines could inform their respective work. In retrospect, it is clear how the diversity of personal histories, professional disciplines, knowledge, experience, language, culture, and politics of the participants influenced the outcomes of the Symposium and provided both challenges and opportunities for further collaboration. Several themes emerged from the meeting, including the relevance of the U.N. Convention on the Rights of the Child (CRC), the role of the family, and consideration of the best interests of the child to complex medical decision-making; research ethics; and the applicability of the principles of bioethics and child rights to the social determinants of health. This essay poses questions related to each of these themes that can serve as a framework for further collaboration. It concludes with a statement by Da Silva and his coauthors that the CRC and the principles of child rights can provide "increased conceptual clarity and a widely endorsed language that can assist pediatric bioethicists in clinical, organizational, and international consultations, as well as in education and policy development." [ABSTRACT FROM AUTHOR]

Why might pediatric bioethicists in the United States reject the U.N. Convention on the Rights of the Child (CRC) as a framework for resolving ethical issues? The essays in this issue present arguments and counterarguments regarding the usefulness of the CRC in various clinical and research cases. But underlying this debate are two historical factors that help explain the seeming paradox of pediatric bioethicists' arguing against child's rights. First, the profession of clinical bioethics emerged in the 1970s as one component of modern medicine's focus on improving health through the application of technologically sophisticated treatments. The everyday work of U.S. bioethicists thus usually involves emerging technologies or practices in clinical or laboratory settings; the articles of the CRC, in contrast, seem better suited to addressing broad policy issues that affect the social determinants of health. Second, U.S. child health policy veered away from a more communitarian approach in the early 20th century for reasons of demography that were reinforced by ideology and concerns about immigration. The divide between clinical medicine and public health in the United States, as well as the relatively meager social safety net, are not based on a failure to recognize the rights of children. Indeed, there is some historical evidence to suggest that "rights language" has hindered progress on child health and well-being in the United States. In today's political climate, efforts to ensure that governments pledge to treat children in accordance with their status as human beings (a child right's perspective) are less likely to improve child health than robust advocacy on behalf of children's unique needs, especially as novel models of health-care financing emerge. [ABSTRACT FROM AUTHOR]

This article offers a child rights theory in pediatric bioethics, applying the principles, standards, and norms of child rights, health equity, and social justice to medical and ethical decision-making. We argue that a child rights theory in pediatric bioethics will help pediatricians and pediatric bioethicists analyze and address the complex interplay of biomedical and social determinants of child health. These core principles, standards and norms, grounded in the U.N. Convention on the Rights of the Child (CRC), provide the foundational elements for the theory and a means for better understanding the complex determinants of children's health and well-being. Rights-based approaches to medical and ethical decision-making provide strategies for applying and translating these elements into the practice of pediatrics and pediatric bioethics by establishing a coherent, consistent, and contextual theory that is relevant to contemporary practice. The proposed child rights theory extends evolving perspectives on the relationship between human rights and bioethics to both child rights and pediatric bioethics. [ABSTRACT FROM AUTHOR]

This analysis adopts a child rights approach--based on the principles, standards, and norms of child rights and the U.N. Convention on the Rights of the Child (CRC)--to explore how decisions could be made with regard to treatment of a severely impaired infant (Baby G). While a child rights approach does not provide neat answers to ethically complex issues, it does provide a framework for decision-making in which the infant is viewed as an independent rights-holder. The state has obligations to develop the capacity of those who make decisions for infants in such situations to meet their obligations to respect, protect, and fulfill their rights as delineated in the CRC. Furthermore, a child rights approach requires procedural clarity and transparency in decision-making processes. As all rights in the CRC are interdependent and indivisible, all must be considered in the process of ethical decision-making, and the reasons for decisions must be delineated by reference to how these rights were considered. It is also important that decisions that are made in this context be monitored and reviewed to ensure consistency. A rights-based framework ensures decision-making is child-centered and that there are transparent criteria and legitimate procedures for making decisions regarding the child's most basic human right: the right to life, survival, and development. [ABSTRACT FROM AUTHOR]

We argue that medical decisions on behalf of children should be made with the welfare of the child as the primary interest, that parents should generally be allowed to determine which options optimize the interests of their child, and that those decisions should be formally challenged only when the parental decision places the child at substantial risk of a serious harm as compared to the option favored by the health-care provider. In situations where moral ambiguity exists and no possible solution could unequivocally be declared the right or good one, a parental decision favoring one or the other of the reasonable options should be supported. Parents should be provided with adequate time to consider information provided and weigh the various options presented. If parents find themselves unable to make a decision, we suggest several strategies for shared decision-making. Finally, we recommend setting time points for reassessment of the situation following each therapeutic change to allow reevaluation of whether the chosen path should be altered. [ABSTRACT FROM AUTHOR]

This article provides support for the use of a particular international human rights law document, the U.N. Convention on the Rights of the Child (CRC), in contemporary pediatric bioethics practice without relying on the legally binding force of the document. It first demonstrates that the CRC's core commitments and values substantially overlap with the core commitments and values of mainstream bioethics and with the laws of many domestic jurisdictions where mainstream bioethics are currently practiced. It then explores some implications of this overlap. For instance, the substantial international human rights law scholarship on how to understand these commitments and values can be helpful in suggesting ways to operationalize them in domestic bioethics practice and can offer insightful, internationally generated ethical perspectives that may not have been considered. The article also argues that the CRC can help health-care organizations develop policies consistent with the best interests of children and that the CRC can serve as a common language of values for transnational health-care collaborations. However, as a final case discussion demonstrates, whatever the merits of the CRC, one may face practical difficulties in trying to use it. [ABSTRACT FROM AUTHOR]

In exploring the relationship between "child rights" and "pediatric bioethics" and how these disciplines might provide mutual support in advancing the health and wellness of children around the world, our article responds to the questions of whether the U.N. Convention on the Rights of the Child (CRC) could be of any benefit in the United States, the only country that has not yet ratified this international treaty, and whether the CRC has any value for addressing clinical pediatric bioethics' questions. We describe the considerable influence that the United States had in developing significant components of the CRC, and we argue that the CRC may be useful for U.S. pediatric bioethicists as a tool to advance children's health policy. We note that ratification of the CRC does not equate with compliance or success. Lastly, we identify a distinction between the use of the term "best interests" by child rights advocates and its use by clinical pediatric bioethicists. [ABSTRACT FROM AUTHOR]

This article examines two typical bioethics frameworks: the "Four Principles" by Beauchamp and Childress, and the "Four Boxes" by Jonsen, Siegler, and Winslade. I show how they are inadequate to address the ethical issues raised by pediatrics, in part because they do not pay adequate attention to families. I then consider an alternate framework proposed by Buchanan and Brock that focuses on four questions that must be addressed for the patient who lacks decisional capacity. This model also does not give adequate respect for the family, particularly the intimate family. I then describe my own framework, which provides answers to Buchanan and Brock's four questions in a way that is consistent with the intimate family and its need for protection from state intervention. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports within the issue on topics including child health, the Convention of the Rights of the Child (CRC) and pediatric bioethics.

Aim: The American Academy of Pediatrics statement on institutional ethics committees highlights the importance of paediatric ethics consultation. However, little has been published on actual experience with ethics consultation in paediatrics. The objective of this study was to review and describe topics covered by a large retrospective sample of clinical ethics consultations in paediatric medicine. Methods: We reviewed ethics consultations involving patients of <18 years of age from January 2005 to July 2013 at one institution. Descriptive statistics of the patient population, the reason for the ethics consultation and the consultant's perceived contribution to the case were generated. Subgroups of patients were compared based on demographic and clinical characteristics using Wilcoxon's rank sum tests, chi-square tests and logistic regression models. Results: Most of the 102 eligible consultations originated from intensive care units and were requested by attending physicians. The most frequent topic leading to consultation was end-of-life issues. Both younger age and male sex were associated with consults for end-of-life issues (p < 0.001 and p = 0.010). Conclusion: This analysis provides important information describing the type of consults requested in paediatric medicine, which is necessary given the movement towards professionalising clinical ethics consultation. Further empirical research is needed on ethics consultation in paediatrics. [ABSTRACT FROM AUTHOR]

The article presents a case study that exemplifies the opposing views of clinicians and parents of a patient on various bioethical issues. It cites the case of a two-year-old boy who suffered several cerebral palsy. The need for the parents and the clinicians to foster open communication and collaborate for the recovery of the patient is also emphasized.

Bioethical decision-making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision-maker, while the teen is developing-and should be encouraged to develop-autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how to deal with borderline cases. To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics. [ABSTRACT FROM AUTHOR]

The article discusses the authors' views on the ethics of prescribing placebos as medical therapeutics in pediatrics. Topics covered include the advantages and disadvantages of using placebos in clinical interventions and stand-alone treatments, the concept of open-label placebos, and the negative impact of placebo use on general medicine and health care.

The article focuses on ethics of everyday healthcare interactions. Topics discussed include definition of ethics as an academic field, explanation on relational ethics, and components of relational ethics that apply to caring for children in medical settings. Cases that show the limitations of biomedical ethics are also mentioned.

We argue that the "best interest standard" for surrogate decision-making is problematic for a number of reasons. First, reliance on the best interest standard is subjective. Second, it leads to behavior that is intolerant and polarizing. Third, appeals to the best interest standard are often vague and indeterminate. After all, cases are usually controversial precisely because reasonable people disagree about what is or is not in a child's best interest. We then recommend that, instead of the best interest standard, parents should be held to a standard that we call the "not unreasonable" standard. By that standard, parents' decisions would be respected unless they were deemed unreasonable. This recommendation would allow a greater range for parental discretion than the best interest standard. [ABSTRACT FROM AUTHOR]

For centuries, many physicians and parents assumed that it was ethically justifiable to lie to a dying child. The reasoning was clear. Because the lie would likely eliminate or prevent a concrete harm (the child's fear), and the lie is about a harm that is unavoidable anyway, a lie appeared to be the morally desirable thing to do. Today, the ethical consensus has shifted. Many doctors and other health professionals now argue that we have an obligation to tell children the cold, hard truth. In this article, I argue that "the cold, hard truth" (assuming we can know it with certainty) might not always be in the best interest of the patient. To illustrate the point, I analyze an episode in Dostoevsky's novel, The Brothers Karamazov, in which a child is dying, his father lies to him about it, and 2 doctors take very different approaches to the truth. Each of these individuals has a particular interest when it comes to the question of "the truth" about the death of Ilyusha. I use this story to ask whether it is ethically permissible to lie to a dying child and, if so, who has the moral authority to tell that lie. [ABSTRACT FROM AUTHOR]

Serious illness puts pressure not only on individual family members but also on the family itself. The care of an acutely ill child requires the family to channel many of its resources toward a single member--an arrangement that can usually be sustained for a while but that cannot continue indefinitely while the other members do without. Illness disrupts ordinary familial functions and, if it is serious enough, threatens to break the family altogether. In this article, I argue that there are situations in which the threat to family integrity is so real and serious that the interests of parents or siblings or sometimes grandparents may override the interests of the pediatric patient. [ABSTRACT FROM AUTHOR]

Two recent policy statements, one from the American Academy of Pediatrics and one from the American College of Medical Genetics, reach very different conclusions about the question of whether children should be tested for adult-onset genetic conditions. The American Academy of Pediatrics policy begins with the presumption that genetic testing for children should be driven by the best interest of the child. It recognizes the importance of preserving the child's open future, recommending that genetic testing for adult-onset diseases be deferred. The American College of Medical Genetics, by contrast, recommended testing children for at least some adult conditions, although it should be noted they have recently modified this recommendation. They justified this recommendation by arguing that it, in fact, was in the best interests of the child and family to receive this information. In this article, we analyze these 2 different positions and suggest ways that the seeming conflicts between them might be reconciled. [ABSTRACT FROM AUTHOR]

In this article, I distinguish between 4 models for thinking about how to balance the interests of parents, families, and a sick child: (1) the oxygen mask model; (2) the wide interests model; (3) the family interests model; and (4) the direct model. The oxygen mask model - which takes its name from flight attendants' directives to parents to put on their own oxygen mask before putting on their child's - says that parents should consider their own interests only insofar as doing so is, ultimately, good for the sick child. The wide interests model suggests that in doing well by my child I am at the very same time doing well by myself. My interests can, and plausibly do, encompass the interests of others; they are, to that extent, wide. There is, then, no sharp separation between the interests of the sick child and the interests of other family members. In the family interests model, families themselves are seen as having interests that are neither identical to the sum, nor a simple function, of the interests of individual family members. The family has goals, values, and aspirations that are essentially corporate rather than individual. According to this model, these family interests can explain why sacrifices can sometimes be demanded of some family members for the sake of others in a medical setting. Finally, the direct model takes a simpler view of family members' interests; it claims that these interests matter simply on their own and should be taken into account in making treatment decisions for a sick child. This model openly considers the competing interests that parents and other family members often have when caring for a sick child, and advocates for weighing those interests when making decisions for and about the sick child. While there is room for all four models at the bedside, I argue that the direct model should be highlighted in clinical decision-making. [ABSTRACT FROM AUTHOR]

This article explores the use of the best interest standard in the context of third-party interventions in ongoing parent-child relationships. I start by examining the history of the best interest standard and show that it has had different meanings in different eras. I then address the nature of the family and the question of whether interests beyond those addressed in the child's best interest standard are a legitimate part of family decision-making. I conclude that ongoing families are entitled to at least a measure of deference in their decisions about their children. Third-party interventions, such as those of doctors or judges, should require something more than simply a difference of opinion about where the child's interests lie. [ABSTRACT FROM AUTHOR]

Administrators sometimes face ethical dilemmas about the allocation of institutional resources. One such situation is when elective surgery cases require reserved ICU beds and the ICU is full. Such situations arise frequently in children's hospitals today. They are sometimes complicated by questions about whether every patient in the ICU belongs there. We present such a situation and responses from Mark Del Becarro, Vice President for Medical Affairs at Seattle Children's Hospital; Aaron Wightman, a nephrology fellow and bioethicist at Seattle Children's Hospital; and Emily Largent, a doctoral student in the joint JD/PhD Program in Health Policy at Harvard University. [ABSTRACT FROM AUTHOR]

The article explores the role of decision makers including clinicians in the pediatric setting in a relational autonomy model. It explains the in-control agent individualistic model of autonomy, its rational orientation versus motional persuasion, and its view of adolescence as a quest for independence. It discusses how relational autonomy unites emotion with reason and its emphasis on adolescent relationships. The application of in-control agent autonomy model to palliative care is tackled.

The article discusses the advantages and disadvantages of unilateral pediatric do not attempt resuscitation (DNAR) orders and the view that it should be an ethically permissible approach. The problems in the application of a unilateral DNAR order are identified. It considers the patient's right to mercy, as well as the tailored code and informed assent or informed nondissent approach. The concern about the slippery slope in ethics and the legal standards regarding DNAR orders are tackled.

The article discusses the ethical responsibilities of pediatricians and parents in communicating prognosis in children with life-threatening illness. Evidence from the adult and pediatric settings about the benefits of communicating prognosis information are presented. Recommendations for physicians to address and manage prognostic uncertainty are offered including a technique for conversations about end-of-life care.

The article discusses the duty of the physician to care for the family in pediatric palliative care. It explains the rationale to care for the family and the importance of improving clinician-family relationships and communication and of enhancing shared decision making between families and the care team. Recommendations for physicians to address the needs of a patient's siblings and to provide bereavement care are offered.

The article explores the opportunities and challenges in pediatric palliative care (PPC) and pediatric medical ethics (PME). The opportunities of shared collaborative communication skills, cross fertilization, administrative efficiency, and the challenges of potential conflict with colleagues, conflict of commitments, delay or underuse of PME, undervaluation of PPC medical expertise and limitation of the scope of medical ethics are discussed. Recommendations to manage the challenges are given.

The article offers information on the U.S. regulations that allows the minor increase over minimal risk related to pediatric research. It mentions that the U.S. regulations that focuses on implementing ethical standards that allows institutional review boards (IRBs) for pediatric research. It mentions that pediatric research that has been approved related the U.S. Department of Health Services (DHHS).

While cancer rates continue to increase, therapy has dramatically decreased the mortality rates. The increased efficacy of current therapies may unfortunately have profound toxic effects on gamete function in both adolescent and reproductive age groups, with infertility as an expected consequence of cancer therapy. Significant progress in the advancement of fertility preservation therapies provides realistic options for future fertility in cancer survivors. However, a number of challenging issues need to be considered when presenting fertility preservation options. This overview highlights some of these considerations including religious-cultural-ethical values, access to care and cost of services, developmental capacity and consent, and posthumous reproduction. [ABSTRACT FROM AUTHOR]

Ethics consultation is a familiar concept to clinicians, and there are site-specific guidelines detailing procedures for both obtaining and performing these consults. Evaluative data about clinician experiences with ethics consults are becoming more extensive but information about family experiences, especially parent perceptions, of the same is lacking. Without a better understanding of those family experiences, an evidence base for ethics consultations cannot be built. This manuscript describes the reasons for obtaining this necessary information, details prior research designed to obtain knowledge about family experiences with pediatric ethics consultations, and suggests mechanisms for acquiring it. [ABSTRACT FROM AUTHOR]

The article provides a psychological interpretation of the public criticism against the practice of pox parties or get-togethers, that allow children to catch chicken pox through play with infected individuals. The author utilizes the dual-process model formulated by Jonathan Haidt at the University of Virginia, in which emotion judgment do not serve to correct rational evaluations. The moral revulsion arising from the pox parties can also be explained by emotions of contempt, anger and disgust, as theorized by Rozin et al.

Julian Savulescu's approach to handling religiously based requests for inappropriate medical treatment in pediatrics focuses primarily on physical safety, a secular conception of well-being and future autonomy. In this paper, I argue that such an approach is culturally and religiously insensitive and overlooks other important values. An acceptable approach will give more consideration to cultural and religious beliefs while still holding them to a high ethical standard. [ABSTRACT FROM AUTHOR]

Background: Pediatrics ethics education should enhance medical students' skills to deal with ethical problems that may arise in the different settings of care. This study aimed to analyze the ethical problems experienced by physicians who have medical education and pediatric care responsibilities, and if those problems are associated to their workplace, medical specialty and area of clinical practice. Methods: A self-applied semi-structured questionnaire was answered by 88 physicians with teaching and pediatric care responsibilities. Content analysis was performed to analyze the qualitative data. Poisson regression was used to explore the association of the categories of ethical problems reported with workplace and professional specialty and activity. Results: 210 ethical problems were reported, grouped into five areas: physician-patient relationship, end-of-life care, health professional conducts, socioeconomic issues and health policies, and pediatric teaching. Doctors who worked in hospitals as well as general and subspecialist pediatricians reported fewer ethical problems related to socioeconomic issues and health policies than those who worked in Basic Health Units and who were family doctors. Conclusions: Some ethical problems are specific to certain settings: those related to end-of-life care are more frequent in the hospital settings and those associated with socioeconomic issues and public health policies are more frequent in Basic Health Units. Other problems are present in all the setting of pediatric care and learning and include ethical problems related to physician-patient relationship, health professional conducts and the pediatric education process. These findings should be taken into consideration when planning the teaching of ethics in pediatrics. Trial registration: This research article didn't reports the results of a controlled health care intervention. The study project was approved by the Institutional Ethical Review Committee (Report CEP-HIJG 032/2008). [ABSTRACT FROM AUTHOR]

Genetic testing offered by direct-to-consumer companies—herein referred to as “predictive genomic testing”—has come under federal scrutiny. Critics claim testing yields uninterpretable and potentially harmful information. Supporters assert individuals have a right to this information, which could catalyze preventive health actions. Despite contentions that predictive genomic testing is a tool of primary disease prevention, little discussion has focused on its use with children. This partly stems from concerns expressed in existing professional guidelines about the potential for psychological and behavioral harm to children engendered by predictive genetic tests for Mendelian diseases. Conducting research to understand the actual benefits and harms is important for policy development and practice guidance and can be ethically justified within the pediatric regulatory framework of research that offers a prospect of direct benefit. Child health psychologists are well poised to contribute to this research effort, and promote the translation of genomic discoveries to improve pediatric medicine. [ABSTRACT FROM AUTHOR]

The article presents an overview of magnetic resonance imaging (MRI) research, which combines electromagnetic forces and sophisticated electronic technology to provide images of the inside of the human body. A discussion of minimal risk standards which have been developed for magnetic resonance imaging research, and of the moral and ethical aspects that are associated with it, is presented.

In the course of the past decades, considerable effort has been expended on the ethical guidance and legal regulation of pediatric clinical trials in Europe. Nonetheless, the conduct of clinical research in the population of minors continues to generate myriad ethical and regulatory issues. This paper explores seven bottlenecks in the ethical guidance and legal regulation that currently govern pediatric clinical research: (1) the integration of research in therapy, (2) the education of clinicians, (3) the empowerment of families, (4) the harmonization of protocol review, (5) the assessment non-clinical research objectives, (6) the control of placebo use, and (7) the provision of fair incentives for pediatric research conduct. For all of these issues, a clear view on the way forward is largely lacking, either because these issues have not been discussed in depth to date or because the existing debates have failed to generate a generally supported consensus. [ABSTRACT FROM AUTHOR]

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This 'empirical turn' is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached. [ABSTRACT FROM AUTHOR]

Pediatric bioethics raises unique issues because children are constantly growing, developing, and changing. The ethical issues that arise for newborns are different from those that arise for seven-year-olds or 17-year-olds. Furthermore, children do not develop cognitive capacities or moral reasoning skills at the same rate. Thus, it is difficult to generalize about what is appropriate or inappropriate for children in either the clinical or the research setting. This article responds to some of the issues raised by a new volume of essays about pediatric bioethics. It puts these issues into historical context by examining the implications of Saul Krugman's famous studies on the etiology and prevention of hepatitis at New York's Willowbrook State School. [ABSTRACT FROM AUTHOR]

OBJECTIVES: Ethics consultation is a widely endorsed mechanism for resolving conflict, facilitating communication, and easing moral distress in health care. Although ethics consultation has been well characterized in the adult setting, little is known about ethics consultation or ethics programs in pediatrics. We conducted a national survey of ethicists at freestanding children's hospitals to explore the structures and processes of their ethics-consultation services and committees and to characterize their training and professional activities. METHODS: We contacted freestanding children's hospitals from the member list of the National Association of Children's Hospitals and Related Institutions (N = 46) to identify the ethics leader at each institution. This individual was invited to complete an on-line survey instrument. The survey asked about ethicists' training to fulfill their ethicsrelated roles, their policies and methods for ethics consultation, and the structure and funding of their ethics committees. Thirty-three ethicists (72%) responded. RESULTS: On-the-job experience (73%) was the most frequently reported form of training; a minority of ethicists endorsed each othertype oftraining. Although 60%ofthe respondents reported having a policy for ethics consultation, several elements recommended by national consensus statements were inconsistently included. In addition, respondents reported variable adherence to standard components of the consultation process, including meeting with the patient or family, following up with the clinical team, and providing a written report ofthe consultation. A minority of respondents reported having salary support (33%), administrative support (46%), or a budget (24%) for their work in ethics. CONCLUSIONS: Although ethics-consultation policies and practices at freestanding children's hospitals are generally well aligned with published norms, our data reveal imperfect adherence to consensus standards. Additional research is needed to determine how this practice variation, as well as the lack of salary support, budgets, and administrative assistance, affect the quality of ethics consultation at these institutions. [ABSTRACT FROM AUTHOR]

The article presents the authors' comments on the article "Moral hazard in pediatrics," by D. Brunnquell and C. M. Michaelson, which appeared in a 2016 issue. According to the authors, Brunnquell and Michaelson's article offers an important insight to understanding and addressing moral hazard that has been experienced by all critical care clinicians and ethics consultants but they have not had the perspicacity to name.