This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients (...) in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

Clinical ethics consultants face a wide range of ethical dilemmas that require broad knowledge and skills. Although there is considerable overlap with the approach to adult consultation, ethics consultants must be aware of differences when they work with infant, pediatric, and adolescent cases. This article addresses unique considerations in the pediatric setting, reviews foundational theories on parental authority, suggests practical approaches to pediatric consultation, and outlines current available resources for clinical ethics consultants who wish (...) to deepen their skills in this area. (shrink)

Johnson and colleagues (2015) report a retrospective review of the experience of an ethics consultation service at a single, highly specialized children's hospital over an 11-year period. Despite i...

This book assists health care providers to understand the specific interplay of the roles and relationships currently forming the debates in pediatric clinical ethics. It builds on the fact that, unlike adult medical ethics, pediatric ethics begins within an acutely and powerfully experienced dynamic of patient-family-state-physician relationship. The book provides a unique perspective as it interacts with established approaches as well as recent developments in pediatric ethics theory, and then explores these developments further (...) through cases. The book first focuses on setting the stage by introducing a theoretical framework and elaborating how pediatric ethics differ from non-pediatric ethics. It approaches different theoretical frameworks in a critical manner drawing on their strengths and weaknesses. It helps the reader in developing an ability to engage in ethical reasoning and moral deliberation in order to focus on the wellbeing of the child as the main participant in the ethical deliberation, as well as to be able to identify the child’s moral claims. The second section of the book focuses on the practical application of these theoretical frameworks and discusses specific areas pertaining to decision-making. These are: the critically ill child, new and enduring ethical controversies, and social justice at large, the latter of which includes looking at the child’s place in society, access to healthcare, social determinants of health, and vaccinations. With the dynamic changes and challenges pediatric care faces across the globe, as well as the changing face of new technologies, no professional working in the field of pediatrics can afford not to take due note of this resource. (shrink)

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature (...) of ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic. (shrink)

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. (shrink)

Background: Ethics consultants (ECs) are increasingly expected to possess core knowledge and skills. Few data address whether ECs actually possess recommended core knowledge. We aimed to measure pediatric ECs’ understanding of ethical principles, identify knowledge gaps, and explore associations between experience/training and knowledge in pediatric ethics consultations. Methods: We identified the 2 ECs most knowledgeable in pediatric ethics from each of 45 freestanding children's hospitals and an equal number of general teaching hospitals in the (...) United States. This yielded a sample of 159 eligible pediatric ECs. Pediatric ECs were sent a survey measuring ethics training, characteristics of the ethics consultation service, and EC knowledge, as assessed by a previously validated scale entitled the Test of Residents’ Ethics Knowledge for Pediatrics (TREK-P). Of 102 completed surveys received, 99 were used in the analysis. Results: Seventy-three percent of ECs had completed ≥1 formal training modality, most commonly bioethics mini-courses, master's degrees, or certificate programs (20–30% each). Respondents infrequently received salary support (32%) or had a budget (28%) to support ethics work. The median TREK-P score was 19 (interquartile range [IQR] 17–21). Forty percent of subjects scored ≥20, surpassing the threshold of adequate performance proposed in previous work. Median scores were significantly higher among ECs with formal training in ethics but did not differ significantly by other variables. In secondary analyses, high scores (≥20) were significantly more common among ECs receiving salary support (55% vs. 33%, p = 0.04) and who had formal ethics training (47% vs. 22%, p = 0.02). Items pertaining to privacy, genetic testing, and assent, were answered incorrectly by >33% of ECs. Conclusions: High scores on a validated ethics knowledge scale were more common among ECs with salary support or formal ethics training. The study highlights knowledge gaps that warrant consideration as EC becomes a professionalized endeavor. (shrink)

This chapter highlighted some salient trends in pediatric ethicsEthics, pediatric from different parts of the globe. It is interesting to note that although diverse, there are many similarities between ethical challenges in pediatrics in different parts of the world.

The primary objective was to review pediatric ethics consultations at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient (...) setting, with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach. (shrink)

While the best interest standard (BIS) enjoys wide endorsement as the ethical and decision-making standard in pediatrics, it has been criticized as vague and indeterminate. Alternate decision-making standards have been proposed to replace or augment the BIS, notably the harm principle (HP) and constrained parental autonomy (CPA) model. In this edition of The Journal of Clinical Ethics, Lainie Friedman Ross argues that CPA is a better standard than the BIS or the HP as both guide and limiter in pediatrics. (...) In response, I review the important work done by the BIS in pediatrics, and argue that neither the HP nor the CPA can take over these functions or replace the BIS. Among other things I argue: (1) The BIS provides more robust protections for the moral claims of children. (2) The CPA model and the HP do not resolve the indeterminacy and vagueness present in complex medical situations, and the BIS is better suited to deal with this vagueness and indeterminacy. (3) The BIS is a general principle of medical ethics with special application in pediatrics; it fits seamlessly into the system of medical ethics and fulfills many functions within pediatrics. The HP and the CPA model do not fit so readily within medical ethics, and are not equipped to take over the functions of the BIS. (shrink)

Background Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.Methods Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children’s hospitals and five programmatic domains.Results 104 children’s hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of (...) patient population, or number of consultants. Academically-affiliated children’s hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5.Conclusions While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults. (shrink)

Pediatric cancer is accompanied by many ethical challenges, particularly those related to respecting the child's opinion and parental responsibility and consent.Questionnaires were collected from 400 participants, from four equal groups: doctors, nurses, parents and medical students, from three cities in Saudi Arabia, about three problematic issues which revolve around the mandatory consent of one or both parents, the extent of a child’s assent, and the acceptable form of consent and assent.Despite the diversity of the participants' cultural backgrounds, most preferred (...) both parents to give consent, followed by either parent without differentiation between parents, which reinforced a trend towards more gender equality. The majority of participants preferred that parental consent forms be detailed enough to obtain the maximum information, while others chose medium‐size consent forms; a large majority preferred that the form seeking to obtain the assent of the child with cancer be short, reflecting their desire not to increase the burden on the child, in addition to the fact that the final decision belongs to the parents rather than the child. Most participants preferred to rely on a child's level of maturity rather than having reached a certain age so that they could give assent, while the rest considered the age of 13‐14 as a suitable age.These findings reflect an increasing ethical awareness regarding parental consent and child assent, and they can be formulated in a recommendation for a more ethical practice in the field of childhood cancer and pediatrics in general. (shrink)

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided (...) guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences (...) of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

In the development of new vaccines, many trials use age de-escalation: after establishing safety and efficacy in adult populations, progressively younger cohorts are enrolled and studied. Age de-escalation promotes many values. The responsibility to protect children from potential risks of experimental vaccines is significant, not only given increased risks of adverse effects but also because parents and medical professionals have a moral responsibility to protect children from harms associated with novel, uncertain interventions. Further, given that young children cannot provide informed (...) consent, acceptable risks for research requiring proxy consent are lower than for adults making decisions for themselves. Although age de-escalation approaches are widely used in vaccine trials, including notably in the recent development of pediatric COVID-19 vaccines, ethicists have not addressed the benefits and risks of these approaches. Their benefits are largely assumed and unstated, while their potential risks are usually overlooked. There are no official ethics guidelines for the use of age de-escalation in clinical research. In this paper, we provide a systematic account of key moral factors to consider when employing age de-escalation. Analyzing pediatric COVID-19 vaccine development as our key case study, we clarify the benefits, risks, and trade-offs involved in age de-escalation approaches and call for the development of evidence-based best practice guidelines to identify when age de-escalation is likely to be an ethical strategy in vaccine development. (shrink)

Net‐risk pediatric research encompasses interventions and studies that pose risks and do not offer a compensating potential for clinical benefit. These interventions and studies are central to efforts to improve pediatric clinical care. Yet critics argue that it is unethical to expose children to research risks for the benefit of unrelated others. While a number of ethical justifications have been proposed, none have received widespread acceptance. This leaves funders with uncertainty over whether they should support and institutional review (...) boards with uncertainty over whether they should approve net‐risk pediatric research. To try to answer these questions, this article describes a justification that I previously proposed and considers two objections to it. This analysis reveals that the opportunity to contribute to a valuable project can justify exposing children to risks even though some trials turn out to be valueless and others turn out to be harmful. It follows that, to protect pediatric participants, institutional review boards need to assess whether trials have the potential to collect socially valuable information and whether they are likely to enroll and retain a sufficient number of participants. (shrink)

ABSTRACT Pediatric psychologists have much to contribute to growing efforts to mitigate the impact of parent mental and behavioral health problems on children’s health and development. However, providing parent-focused psychological services within the pediatric setting brings many new ethical considerations and challenges. Guided by the American Psychological Association’s Ethics Code, this paper presents an ethical case for providing these types of services, followed by a comprehensive analysis of the unique ethical challenges likely to be encountered when doing (...) so. Recommendations are offered to support the ethical delivery of parent-focused psychological services in pediatric settings. (shrink)

In this article, we critically examine some of the ethical challenges and interpretive difficulties with possible future non-clinical applications of pediatric fMRI with a particular focus on applications in the classroom and the courtroom - two domains in which children come directly in contact with the state. We begin with a general overview of anticipated clinical and non-clinical applications of pediatric fMRI. This is followed by a detailed analysis of a range of ethical challenges and interpretive difficulties that (...) trouble the use of fMRI and are likely to be especially acute with non-clinical uses of the technology. We conclude that knowledge of these challenges and difficulties should influence policy decisions regarding the non-clinical uses of fMRI. Our aim is to encourage the development of future policies prescribing the responsible use of this neuroimaging technology as it develops both within and outside the clinical setting. (shrink)

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children (...) with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

Techniques from behavioral economics—nudges—may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate (...) sometimes seem committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges. (shrink)

Neuroimaging has provided insight into numerous neurological disorders in children, such as epilepsy and cerebral palsy. Many clinicians and investigators believe that neuroimaging holds great promise, especially in the areas of behavioral and cognitive disorders. However, concerns about the risks of various neuroimaging modalities and the potential for misinterpretation of imaging results are mounting. Imaging evaluations also raise questions about stigmatization, allocation of resources, and confidentiality. Children are particularly vulnerable in this milieu and require special attention with regards to safety (...) guidelines and modality adaptations. This article examines pediatric neuroimaging practice through an ethics lens. Most authors in the field of neuroethics focus on the future concerns of neuroimaging. In contrast, our paper examines ethical matters surrounding current clinical applications in the pediatric population. We first provide a brief overview of the neuroimaging technologies most commonly used in a pediatric clinical context and then discuss a variety of ethical issues arising from the use of these technologies. (shrink)

Fiester and Yuan discuss important ethical concerns regarding the use of behavior contracts in addressing conflict with patients and families labeled as “difficult” (Fiester and Yuan 2023). We agre...

Pediatric health care workers often perform, promote, and advocate use of public funds for animal research . We aim to determine whether HCW consider common arguments in support of AR convincing.

In pediatric emergency rooms (ERs), social workers must navigate diverse responsibilities including acting as advocates and liaisons between families and multidisciplinary treatment teams, providing compassionate support to families in crisis, and assessing for and reporting any suspicions of child abuse or neglect. These potentially contrasting roles can place social workers at the center of dealing with ethical dilemmas and advocating against ethical violations, such as bias and discrimination toward families. This qualitative study seeks to gain insight into ethical issues (...) commonly encountered in pediatric ERs by exploring the perspectives of 23 social workers at Level 1 trauma centers in the United States. Thematic analysis was used to develop major themes and subthemes related to ethical violations, dilemmas, and best practices in pediatric ERs. Major themes emerged related to unfair treatment of families (with subthemes of bias, discrimination, and compassion fatigue), ethical dilemmas (with subthemes of cultural issues, safety and system issues), and promoting ethical practices (with subthemes of self-awareness, advocacy, and efforts to change the system). This study provides important insights into ethical issues in pediatric ERs as experienced by social workers and can inform efforts to improve the quality and equity of care for all families in pediatric ERs. (shrink)

Medication reconciliation for pediatric oncology patientparticipants enrolled in clinical trials often reveals the use of chemical complementary medicine alongside protocol therapeutic agents. Considering the blurry delineation between clinical ethics and research ethics, this paper demonstrates how complementary medicine-related protocol violations introduce ethical questions of who should be included and excluded from clinical trials and offers recommendations on how to manage physician-patient-family interactions around these challenging issues.

BackgroundClinical trials involving children previously considered unethical are now considered essential because of the inherent physiological differences between children and adults. An integral part of research ethics is the informed consent, which for children is obtained by proxy from a consenting parent or guardian. The informed consent process is governed by international ethical codes that are interpreted in accordance with local laws and procedures raising the importance of contextualizing their implementation.FindingsIn Zimbabwe the parental informed consent document for children participating (...) in clinical research is modeled along western laws of ethics and requires that the parent or legally authorized representative provide consent on behalf of a minor. This article highlights the experiences and lessons learnt by Zimbabwean researchers in obtaining informed consent from guardians of orphaned children participating in a collaborative HIV clinical trial involving the Medical Research Council, United Kingdom and four centers, three of which are in Uganda. Researchers were faced with a situation where caregivers of orphaned children were not permitted to provide informed consent for trial participation. The situation contrasted with general clinical practice where consent for procedures on orphans is obtained from their caregivers who are not legal guardians.ConclusionThe challenges faced in obtaining informed consent for orphans in this clinical trial underscores the need for the Zimbabwe ethics committee to develop an ethical and legal framework for pediatric research that is based on international guidelines while taking into account the cultural context. The Medical Research Council of Zimbabwe has since started the process that is expected to involve critical stakeholders namely the community including children, ethicists, the legal fraternity and researchers. (shrink)

Can Covid-19 vaccines be used off-label? Should they be? These were questions on the minds of parents, pediatricians, and the media when the FDA fully approved the Pfizer-BioNTech Covid-19 vaccine for people aged 16 and up. Yet the American Academy of Pediatrics cautioned against pediatric off-label use of the vaccine, and the CDC Covid-19 Vaccine Provider Agreement appears to prohibit it. After briefly contextualizing ethical and legal precedents regarding off-label use, we offer an analysis of the ethical permissibility of (...) and considerations for pediatric off-label Covid-19 vaccination based on individual benefits, risks, and available alternatives. Our analysis challenges the ethics of a blanket prohibition on off-label pediatric Covid-19 vaccination, as it limits clinician ability to provide care they may determine to be clinically and ethically appropriate. At the same time, our analysis acknowledges that Covid-19 creates population-level ethical considerations that are at times in tension with individual health interests. (shrink)

Background -- Evaluating the worry -- Proposed justifications -- Human interests and human causes -- Our connection to our contribution -- The value of passive contributions -- Implications -- Objections and the potential for abuse.

This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating (...) the media are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers. (shrink)

Background Providing care to children with cancer is one of the most challenging areas of ethical care for nurses. Few studies have addressed nurses’ perception of the barriers to giving ethical care in oncology departments. Thus, it is essential that the ethical challenges in caregiving as perceived by oncology nurses be investigated. Objective The present study was conducted to investigate the ethical challenges as perceived by nurses in pediatric oncology units in the south of Iran. Research design The present (...) study is a qualitative work of research with a conventional content analysis design. Data were collected via individual semi-structured interviews. The collected data were analyzed using the qualitative content analysis method. Participants and research context The participants were 21 nurses from pediatric oncology units in state hospitals who were selected by purposeful sampling. Sampling continued until the data were saturated. The study lasted from April to October 2022. Findings Three main themes, promoting psychological safety in the children, respect for the dignity of the children, and expansion of support for families, and nine subthemes were extracted from the data. Ethical considerations The study’s protocol was approved by the Research Ethics Committee of the University of Medical Sciences and ethical principles were followed throughout the study. Discussion and conclusion From the nurses’ perspective, the major ethical challenges in providing ethical care in pediatric oncology units were reducing tension toward promoting the patients’ psychological safety, showing respect for the identity and dignity of the children with cancer, and expanding support of the patients’ families. By creating the right cultural and professional context and establishing proper protocols, healthcare policymakers and administrators can take effective steps toward eliminating the barriers to providing ethical care. (shrink)

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is (...) a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts. (shrink)

Background: Clinical trials involving children previously considered unethical are now considered a necessity because of the inherent physiological differences between children and adults. An integral part of research ethics is the informed consent, which for children is obtained by proxy from a consenting parent or guardian. The informed consent process is governed by international ethical codes that are interpreted in accordance with local laws and procedures raising the importance of contextualizing their implementation.DiscussionThe Zimbabwean parental informed consent document for children (...) participating in clinical research is modeled along western laws of ethics and requires that the parent or legally authorized representative provide consent on behalf of a minor. This article highlights the experiences and lessons learnt by Zimbabwean researchers in interpreting and obtaining informed consent for orphaned children participating in a collaborative HIV clinical trial involving the Medical Research Council, United Kingdom and four centers, three of which are in Uganda. Researchers were faced with a situation where caregivers of orphaned children were not permitted to provide informed consent for trial participation if the Zimbabwean courts had not legally appointed them. The situation contrasted with general clinical practice where legal papers where not required for providing consent for surgical procedures for example.SummaryExperiences gained from this clinical trial revealed that while there may be internationally established guidelines governing the process of obtaining informed consent for children participating in research, there may be need to be cognizant of the culture within which the research is taking place. This may call for the development of an ethico-legal framework that governs research-involving children in Zimbabwe that would facilitate their participation in clinical research, while ensuring that they are protected from exploitation. The Medical Research Council of Zimbabwe has since started developing that framework in a process that is expected to involve critical stakeholders namely the community including children, ethicists, the legal fraternity and researchers. (shrink)

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. (shrink)

In many ways, Maddie’s case brings together some of the most challenging features seen in clinical ethics consultation. First, it centers around a heart-wrenching event—the near-drowning of a young...