Pediatric Bioethics Research Articles

Design and Pilot Implementation of an ECHO Module to Facilitate Treatment of Hepatitis C Virus Infection During Pregnancy

Abstract Background Pregnant patients are largely excluded from Hepatitis C virus (HCV) research and treatment. Studies show that pregnant patients want to discuss treatment while providers feel they lack the knowledge and training for these discussions. To bridge this gap, we designed an ECHO module about management of HCV in pregnancy and infancy. Methods Content experts from pediatric infectious diseases, hepatology, maternal-fetal medicine, bioethics and members of ECHO-Chicago discussed: prior data, potential topics, target audience and scheduling of sessions. We held 8 one-hour sessions with 20-30 minutes of didactics and 30-40 minutes of solicited case discussion. Participants included those who participated in prior ECHO training and prenatal providers in local and regional practices. A 7-point Likert scale pre- and post-training survey was administered to assess metrics of self-efficacy for management of HCV in pregnancy and childhood. Results The sessions were conducted from May to June 2023 on the following topics: HCV screening; HCV pathophysiology/clinical presentations; staging fibrosis in HCV; HCV Treatment in non-pregnant patients; harm reduction; clinical considerations of HCV in pregnancy; shared decision-making for HCV treatment in pregnancy; and HCV screening in infants & treatment for children. Fourteen participants completed pre- and post-surveys. In the pre-survey, participants had low ratings of self-efficacy (average 3.0). In the post-survey (Table 1), participants reported dramatic increases in all areas (average 5.2, increase of 2.2) with the largest in the following areas: “Ability to discuss and manage timing of hepatitis C treatment in a pregnant person”, average 5.1, increase of 3; “Ability to identify suitable pregnant candidates for treatment for Hepatitis C”, average 5.2, increase of 2.7. For context, a 1-point increase in self-efficacy is considered meaningful. All respondents reported increased ability to address HCV in a preconception, pregnant, postpartum, or neonatal population. Conclusion As pivotal studies of pan-genotypic antivirals indicate efficacy and safety during pregnancy, this ECHO module could be distributed to support providers who are discussing therapy initiation. Table 1: Average Change in Self-Efficacy between Pre- & Post-Series Surveys

Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy's narrative, situated in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics.

Competence or Experience

Competence or Experience

How We Found Consensus on Pediatric Decision-Making and Why It Matters.

This article describes the process engaged by 17 expert scholars in the development of a set of six consensus recommendations about the normative foundations of pediatric decision-making. The process began with a robust pre-reading assignment, followed by three days of in-person symposium discussions that resulted in a publication in Pediatrics entitled "Pediatric Decision-Making: Consensus Recommendations" (Salter et al. 2023). This article next compares the six recommendations to existing statements about pediatric decision-making (specifically those developed by the American Academy of Pediatrics), highlighting similarities and differences. Finally, the article discusses the value of finding consensus in the field of pediatric bioethics.

Newborn Male Circumcision.

This symposium includes twelve personal narratives from parents about making the decision whether to circumcise their infant male children. The authors of the narratives include five fathers and seven mothers. Nine of the 12 parent authors opted to circumcise their infant sons, though the reasons they stated for doing so varied. Most of the parent authors relied on cultural or social beliefs, religious guidance, or a desire for sameness with the infant's father. Parents who didn't circumcise their male infants discuss their convictions about autonomy, bodily rights, and the medical benefits of circumcision versus the harm or pain caused by the procedure. The symposium includes four expert commentaries on the narratives that are informed and enriched by the commentators' expertise in pediatric bioethics, healthcare ethics, gender studies, Jewish law and tradition, and the medical and surgical techniques of circumcision.

Centering Patients’ Voices in Artificial Intelligence‒Based Telemedicine

Centering Patients’ Voices in Artificial Intelligence‒Based Telemedicine Stephanie A. Kraft JD Affiliation Stephanie A. Kraft is with the Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, and the Department of Pediatrics, School of Medicine, University of Washington, Seattle. CopyRightCorrespondence should be sent to Stephanie A. Kraft, c/o Seattle Children’s Research Institute, 1900 Ninth Ave, M/S JMB-6, Seattle, WA 98101 (e-mail: stephanie.[email protected]org). Reprints can be ordered at https://ajph.org by clicking the “Reprints” link. https://doi.org/10.2105/AJPH.2023.307270 Accepted: February 16, 2023 Published Online: March 16, 2023

Exploring the Ethics of the Parental Role in Parent‐Clinician Conflict

In pediatric health care, parents and clinicians sometimes have competing ideas of what should be done for a child. In this article, we explore the idea that notions of what should be done for a child partly depend on one's perception of one's role in the child's life and care. Although role-based appeals are common in health care, role-differentiated approaches to understanding parent-clinician conflicts are underexplored in the pediatric bioethics literature. We argue that, while the parental role is recognized as having social content or value, and sometimes legal force, it is not always recognized as having ethical content or value, as the clinician's role is. We draw together key insights from the normative and empirical literature on parental roles to show how a role-based lens might inform clinicians' and clinical ethicists' approach to cases in which parents and clinicians disagree.

Addressing the Ethical Challenges of Providing Kidney Failure Care for Children: A Global Stance.

Children with kidney failure require kidney replacement therapy (KRT), namely maintenance dialysis and kidney transplant. Adequate kidney failure care consists of KRT or conservative treatment with palliative care. In the context of kidney failure, children depend on parents who are their surrogate decision-makers, and the pediatric nephrology team for taking decisions about KRT or conservative care. In this paper, we discuss the ethical challenges that arise relating to such decision-making, from a global perspective, using the framework of pediatric bioethics. While many ethical dilemmas in the care of children with KRT are universal, the most significant ethical dilemma is the inequitable access to KRT in low & middle income countries (LMICs) where rates of morbidity and mortality depend on the family's ability to pay. Children with kidney failure in LMICs have inadequate access to maintenance dialysis, timely kidney transplant and palliative care compared to their counterparts in high income countries. Using case vignettes, we highlight how these disparities place severe burdens on caregivers, resulting in difficult decision-making, and lead to moral distress among pediatric nephrologists. We conclude with key action points to change this status-quo, the most important being advocacy by the global pediatric nephrology community for better access to affordable kidney failure care for children.

A Look Back at Bioethics: William L. Meadow, 1948-2019.

A Look Back at Bioethics: William L. Meadow, 1948-2019.

Ethical Challenges in Pediatric Oncology Care and Clinical Trials.

The care of pediatric cancer patients is a vast departure from cancer care of adults. While the available treatment modalities-chemotherapy, radiation, and surgery-are the same, the diseases, care-delivery, and outcomes differ greatly. And just as 'children are not just little adults,' pediatric bioethics occupies a distinct place within the broader field of bioethics. In this chapter, we will begin with an introduction to fundamental principles and frameworks for understanding ethical issues in pediatrics, highlighting the triadic nature of medical decision-making between a physician, the child-patient, and the child's parent as the surrogate decision-maker. We will then delve into further details of how these principles and frameworks shape the care of children with cancer, examining specific ethical challenges commonly encountered by pediatric oncologists. We will traverse this landscape by examining issues involving (a) informed consent; (b) research involving children; (c) end of life; (d) genetic and genomic testing; and (e) professionalism. We also examine ethical challenges in clinical research, in children and more broadly. While not an exhaustive exploration of the myriad ethical issues one might encounter in pediatric cancer medicine and clinical trials, this chapter provides readers with a foundation for further reading.

An Organ for My Child: Public Appeals for Limited Resources.

The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians.

Introduction: Defining Cases in Pediatric Bioethics.

The history and practice of pediatric bioethics, like medicine itself, is inherently case based. Just as anatomy, pathophysiology, and pharmacology are applied in making clinical decisions for pediatric patients, ethical theory, principles, standards, and frameworks must also be applied to each clinical encounter. Sometimes, this occurs without much thought or controversy, whereas other cases may be marked by the lack of a clear path or a conflict over the right and good decision. But in the clinical setting, unlike the classroom, decisions must be made. Since its inception, specific cases have captured the attention of ethics scholars and helped define pediatric bioethics, challenging existing practice, beliefs, or standards, requiring critical reflection and debate, and sometimes leading to the creation of new theories, understandings, and approaches. In the last 50 years, advances in medical technology, social changes altering the relationship between patients and their health care providers, the rise of the Internet, changes in attitudes about the moral worth of all children, and many other factors have changed the nature of medical decision-making for children and their families. The bioethics movement has expanded dramatically with these changes and has both influenced and been influenced by these changes in societal … Address correspondence to Aaron Wightman, MD, MA. E-mail: aaron.wightman@seattlechildrens.org

"The Hopkins Mongol Case": The Dawn of the Bioethics Movement.

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.

Reimagining Childhood: Responding to the Challenge Presented by Severe Developmental Disability.

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion-indeed, a full reimagining-of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally.

The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights Frameworks.

This article explores the intersection of pediatric bioethics and child rights by examining the best interest standard as it operates within the pediatric bioethics framework in the United States and the child rights framework based on the UN 1989 Convention on the Rights of the Child (CRC). While the "best interest of the child" standard is central to both pediatric bioethics and the child rights community, it operates only as a guidance principle, and not as an intervention principle, in decision-making within U.S. pediatric bioethics, whereas it operates as both a guidance and intervention principle in the child rights community. The differences in how the best interest standard is operationalized lead to different roles for the family, the state, and the minor in decision-making processes and outcomes. We examine the recent case of Charlie Gard to illustrate some of these differences.

Spotlight on the Pediatric Bioethics Special Interest Group.

Spotlight on the Pediatric Bioethics Special Interest Group.

Examining the complementarity of 'children's rights' and 'bioethics' moral frameworks in pediatric health care.

The United Nations Convention on the Rights of the Child has inspired numerous initiatives to recognize children's health-related rights. Whereas children's rights have served as the dominant moral framework for child health concerns in Europe, pediatric bioethics has emerged as the principal framework used in North America. Despite their similarities, these two frameworks differ significantly. Children's rights initiatives tend to be universalist, highlighting substantive standards for all children, while pediatric bioethics has developed norms, models, and procedures for the ethical analysis and management of individual cases. The aim of this article is to critically examine the respective contributions and intersections of children's rights and pediatric bioethics moral frameworks in child health. We describe our collaboration bridging our work with these two frameworks to address pediatric health-care concerns in the Republic of Georgia. We conclude with recommendations for how the complementarity of these two frameworks can be further bridged and promoted internationally.

What Are the Limits of Parental Authority? Pediatric Bioethics and the Law (SA531)

What Are the Limits of Parental Authority? Pediatric Bioethics and the Law (SA531)

Family Centered Bioethics: A New Bioethical Framework for Decision-Making in Neonatal and Pediatric Units

Pediatric bioethics emerged from the transfer of the framework of bioethical reflection on adult competent patients, which focuses on the principle of autonomy, to minors and incompetent patients. However, we believe that the framework of patient autonomy is not appropriate for pediatric bioethics and propose a new framework based on the moral responsibility of parents and health care professionals towards the needs of the sick child. The essential elements in creating a new framework for pediatric bioethics are: the primacy of the principle of beneficence, over the principle of autonomy; the therapeutic alliance as an affective and genuine union between the physician, child patient and parents; the therapeutic intentionality as the engine of this alliance; and finally, a real family centered care. These elements establish the bioethical framework of neonatal and pediatric units, by integrating the child’s interests within the family’s, and permits us to propose an authentically family-centered bioethics.

Research on medical practices and the ethics of disclosure.

In March 2013, the Office of Human Research Protection (OHRP) issued a finding against the University of Alabama and other institutions for failing to meet regulatory informed consent requirements, in particular regarding reasonably foreseeable risks during the conduct of the Surfactant, Positive Pressure, and Oxygenation Randomized Trial.1 This study compared 2 different target oxygen saturation levels that were part of usual practice in extremely premature infants. As a result of public disagreement regarding whether the differences in outcomes should be considered a “research risk,” OHRP suspended the determination and held a public hearing in August 2013.2 On October 24, 2014, the OHRP released draft guidance, for public comment, on disclosing reasonably foreseeable risks in research evaluating “standards of care,” which on the surface, seems to be a reasonable approach.3 But a more careful analysis reveals a view that may hinder research without increasing protection of participants. The OHRP draft guidance mischaracterizes the purpose of research, which we agree should be disclosed to participants, as risks of research. The OHRP draft guidance misidentifies minimal-risk research as greater than minimal risk. This will result in requiring misleading information in the informed consent process by making research sound riskier than it really is. This will be particularly problematic for pediatric research, as parents and institutional review boards (IRBs) need sound advice to protect children from risky research and to encourage ethically acceptable research that is important to improve child health. We suggest a number of changes should be made before any guidance becomes finalized. First, OHRP should not use the terminology of “standard of care” research. “Standard of care” is a legal construct to define a floor of treatment below which claims of negligence are appropriate. To better capture the range of … Address correspondence to Benjamin S. Wilfond, MD, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, 1900 9th Ave, Seattle, WA 98101. E-mail: benjamin.wilfond{at}seattlechildrens.org