Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

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.

Diagnosis, treatment and disclosure: A qualitative exploration of participant challenges in a Monogenic Diabetes Registry.

PURPOSE: Maturity-onset diabetes of the young (MODY) represents a heterogenous group of monogenic diabetes. Despite its autosomal dominant inheritance, many MODY participants in the University of Chicago Monogenic Diabetes Registry have no family members enrolled. We aimed to gather data on the Registry participants' experiences in (1) receipt of an accurate diagnosis, (2) decisions regarding disclosure of their MODY genetic test results with biological relatives, and (3) recommendations toward our Registry's processes and outreach. METHODS: We conducted 20 one-on-one semistructured interviews with adult Registry participants. RESULTS: All participants found navigating the health care system challenging because of the providers' unfamiliarity with MODY and dismissal of its importance post diagnosis. All had shared their results with at least 1 relative, however many found their relatives resistant to engaging with their providers. Participants wanted to receive targeted information on their condition and connect with other participants who have faced similar diagnostic and treatment challenges. CONCLUSION: Our results demonstrate that our probands faced resistance to reclassification of their diabetes from both health care providers and relatives. In an effort to improve cascade testing, the Registry is designing a portal to facilitate participant-research team communication and provide additional supports for participants to involve family members in testing.

How Race, Ethnicity, and Social Determinants of Health Are Reported in Three European Pediatric Journals.

OBJECTIVES: To evaluate how geography, ethnicity, ancestry, and race or religion (GEAR) and social determinants of health (SDOH) data are reported and discussed in 3 European pediatric journals and to compare practices between European and American journals. STUDY DESIGN: A retrospective analysis of all original articles that enrolled children (<18 years old) published from January through June 2021 in 3 European pediatric journals: Archives of Disease in Childhood, European Journal of Pediatrics, and Acta Paediatrica. We categorized SDOH using the 5 domains as outlined by the US Healthy People 2030 framework. For each article, we recorded whether GEAR and SDOH were reported in the results and interpreted in the discussion sections. We then compared these European data by χ2 tests with data from 3 US pediatric journals. RESULTS: Of the 320 studied articles, 64 (20%) and 80 (25%) reported GEAR and SDOH data in the results sections, respectively. Of those articles, 32 (50%) and 53 (66.3%) studies interpreted the GEAR and SDOH data in their discussion sections, respectively. On average, articles reported factors from 1.2 GEAR and 1.9 SDOH categories with great variability in the variables collected and data groupings. Articles published in European journals were less likely to report GEAR and SDOH than articles published in US journals (P < .001 for both). CONCLUSIONS: Articles published in European pediatric journals did not commonly report either GEAR or SDOH, and there was wide variation in how data were collected and reported. Harmonization of categories will allow for more accurate interstudy comparisons.

International Pediatric Transplant Association (IPTA) position statement supporting prioritizing pediatric recipients for deceased donor organ allocation.

A position statement of the International Pediatric Transplant Association endorsing prioritizing pediatric recipients for deceased donor organ allocation, examining the key ethical arguments that serve as the foundation for that position, and making specific policy recommendations to support prioritizing pediatric recipients for deceased donor organ allocation globally.

The Use of Race, Ethnicity, and Social Determinants of Health in Three Pediatrics Journals.

OBJECTIVE: To evaluate how race, ethnicity, and social determinants of health (SDOH) are reported and discussed in 3 pediatrics journals. STUDY DESIGN: Bibliometric analysis of original articles that enrolled children as participants between January-June 2021 published in The Journal of Pediatrics, Pediatrics, and JAMA Pediatrics. We recorded in aggregate the inclusion of race, ethnicity, and SDOH data from the methods, results, and discussion sections of each article. We then used χ2 analyses and t tests to compare recording and use of race, ethnicity, and SDOH data on a number of factors. RESULTS: A total of 317 original articles were included with 200 (63.1%) conducted in the US. Researchers presented 116 unique race and ethnicity categories. US studies reported race significantly more frequently than international studies (166/200, 83.0% vs 29/117, 24.8% P < .001), yet only 24.7% (41/166) of US and 10.3% (3/29) of international studies that reported these data interpreted their significance and linked such to their study findings. US federal funding influenced reporting of race and ethnicity but not interpretation. Less than one-half of all studies reported SDOH (147/317, 46.4%), and very few that reported SDOH interpreted the data to study findings in both the US (18/106, 17.0%) and internationally (3/41, 7.3%). CONCLUSION: Race, ethnicity, and SDOH data are reported without consistent categories, and their significance is not often explained in both US and international articles. Researchers should be more intentional about how and why they collect, report, and interpret these data to help identify health disparities and highlight health inequities.

The case against COVID-19 vaccine mandates in pediatric solid organ transplantation.

BACKGROUND: The American Society of Transplantation in conjunction with the International Society for Heart and Lung Transplantation released a joint statement on August 13, 2021 in which they strongly recommend that solid organ transplant (SOT) recipients and their eligible household members and close contacts be vaccinated against SARS-CoV-2 with an approved COVID-19 vaccine. Some SOT programs have gone further and will refuse to list or transplant candidates unless the candidate and their household are vaccinated against SARS-CoV-2. METHODS: Two general pediatrician-ethicists use current best evidence and moral theory to argue why it is unethical to mandate COVID-19 vaccination for pediatric SOT candidates, their primary support person, and their households. RESULTS: Pediatric vaccine mandates are most justifiable when they prevent the harm of a serious vaccine preventable disease (VPD) in children in settings where transmission is highly likely and there are no alternatives that are effective in preventing transmission that intrude less on individual freedom. An additional justification for a vaccine mandate in the SOT context is stewardship of a scarce resource if there is significant risk of graft loss from the VPD to an unvaccinated SOT candidate or recipient. Current evidence does not support fulfillment of these criteria in pediatric solid organ transplantation. CONCLUSIONS: Making SOT listing contingent on COVID-19 vaccination is problematic. Though there is some risk of harm to a pediatric SOT candidate in remaining unvaccinated, the risk of harm of not being listed and transplanted is greater and overriding.

Ethics of Organ Transplantation in Persons with Intellectual Disability.

Historically, individuals with intellectual disability and end-stage organ disease were discriminated against by transplant professionals and often excluded from transplantation waitlists. Despite antidiscrimination legislation, some transplant programs continue to include intellectual disability as a relative, if not an absolute, contraindication to listing for an organ; this is true for both pediatric and adult individuals in end-stage organ disease. This commentary opposes the absolute exclusion of patients with intellectual disability and end-stage organ disease from transplantation waitlists provided that the candidates are expected to gain a predefined minimum benefit threshold of life-years and quality-adjusted-life years. Intellectual disability is one of many factors that should be considered in determining transplant eligibility and each candidate should have an individualized interdisciplinary assessment.

Impact of the Coronavirus Disease 2019 Pandemic on Authorship Gender in The Journal of Pediatrics: Disproportionate Productivity by International Male Researchers.

OBJECTIVE: To assess the impact of the coronavirus disease 2019 (COVID-19) pandemic on authorship gender in articles submitted to The Journal of Pediatrics. STUDY DESIGN: Using gender-labeling algorithms and human inspection, we inferred the gender of corresponding authors of original articles submitted in January-February and April-May of 2019 and 2020 noting those articles related to the COVID-19 pandemic. We used Pearson χ2 tests to determine differences in gender proportions during the selected periods in the US and internationally. RESULTS: We analyzed 1521 original articles. Submissions increased 10.9% from January-February 2019 to January-February 2020 and 61.6% from April-May 2019 to April-May 2020. Women accounted for 56.0% of original articles in April-May 2019 but only 49.8% of original articles in April-May 2020. Original articles focused on COVID-19 represented a small percentage of additional articles submitted in January-February 2020 (1/33 or 3.0%) and (53/199 or 26.6%) in April-May 2020 compared with the number of submissions in the same months in 2019. International male corresponding authors submitted a significantly larger proportion of original articles compared with international female corresponding authors in April-May 2020 compared to April-May 2019 (P = .043). There was no difference in corresponding author gender proportion in the US (US in April-May of 2020 vs April-May of 2019; P = .95). There was no significant difference in final dispositions based on corresponding author gender for original articles from 2019 and 2020 (P = .17). CONCLUSIONS: Original article submissions to The Journal increased in April-May 2020, with the greatest increase by international male corresponding authors. The majority of the submission growth was not related to COVID-19.

Analyzing Trends in the Global Surge of Coronavirus Disease 2019 Pandemic Submissions to The Journal of Pediatrics.

During February to December 2020, there were 498 coronavirus disease 2019 (COVID-19) pandemic-focused brief report and original article submissions to The Journal of Pediatrics. The majority were from international authors (68.1%). Early in the pandemic, geographic origin of the corresponding author paralleled the path of COVID-19 infection both within the US and around the globe.

SARS-CoV-2 vaccine testing and trials in the pediatric population: biologic, ethical, research, and implementation challenges.

As the nation implements SARS-CoV-2 vaccination in adults at an unprecedented scale, it is now essential to focus on the prospect of SARS-CoV-2 vaccinations in pediatric populations. To date, no children younger than 12 years have been enrolled in clinical trials. Key challenges and knowledge gaps that must be addressed include (1) rationale for vaccines in children, (2) possible effects of immune maturation during childhood, (3) ethical concerns, (4) unique needs of children with developmental disorders and chronic conditions, (5) health inequities, and (6) vaccine hesitancy. Because COVID-19 is minimally symptomatic in the vast majority of children, a higher acceptable risk threshold is required when evaluating pediatric clinical trials. Profound differences in innate and adaptive immunity during childhood and adolescence are known to affect vaccine responsiveness for a variety of childhood diseases. COVID-19 and the accompanying social disruption, such as the school shutdowns, has been disproportionately damaging to minority and low-income children. In this commentary, we briefly address each of these key issues, specify research gaps, and suggest a broader learning health system approach to accelerate testing and clinical trial development for an ethical and effective strategy to implement a pediatric SARS-CoV-2 vaccine as rapidly and safely as possible. IMPACT: As the US begins an unprecedented implementation of SARS-CoV-2 vaccination, substantial knowledge gaps have yet to be addressed regarding vaccinations in the pediatric population. Maturational changes in the immune system during childhood have influenced the effectiveness of pediatric vaccines for other diseases and conditions, and could affect SARS-CoV-2 vaccine responsiveness in children. Given that COVID-19 disease is far milder in the majority of children than in adults, the risk-benefit of a pediatric SARS-CoV-2 vaccine must be carefully weighed. The needs of children with developmental disabilities and with chronic disease must be addressed. Minority and low-income children have been disproportionately adversely affected by the COVID-19 pandemic; care must be taken to address issues of health equity regarding pediatric SARS-CoV-2 vaccine trials and allocation. Research and strategies to address general vaccine hesitancy in communities must be addressed in the context of pediatric SARS-CoV-2 vaccines.

Pediatric Intensivist and Pediatric Neurologist Perspectives and Practices on Death by Neurologic Criteria.

Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, cross-sectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had performed an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency.

Reopening K-12 Schools in the Era of Coronavirus Disease 2019: Review of State-Level Guidance Addressing Equity Concerns.

OBJECTIVE: To determine how state guidance documents address equity concerns in K-12 schools during the coronavirus disease 2019 pandemic. STUDY DESIGN: Using online searches, we collected state-level documents from all 50 states and the District of Columbia discussing reopening plans for K-12 schools in the 2020-2021 academic year. We examined whether these documents explicitly mentioned equity as a concern, as well as if and how they addressed the following equity issues: food insecurity and child nutrition, homelessness or temporary housing, lack of access to Internet/technology, students with disabilities or special needs, English-language learners, students involved with or on the verge of involvement with the Department of Children and Family Services or an equivalent agency, mental health support, students/staff at greater risk of severe illness from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, and students/staff living with someone at greater risk of severe illness from SARS-CoV-2 infection. RESULTS: Forty-four of 51 states (86%) explicitly mentioned equity as a concern or guiding principle. At least 90% of states offered guidance for 7 equity issues. Fewer than 75% of states addressed homelessness or temporary housing, students involved with or on the verge of involvement with Department of Children and Family Services or an equivalent agency, and students/staff living with someone at greater risk of severe illness from SARS-CoV-2 infection. CONCLUSIONS: Wide variability exists in state-level guidance to help K-12 schools develop reopening plans that protect those who are most vulnerable to learning loss or reduced access to basic needs. Interpretation and implementation by local educational agencies will need to be assessed.

Surrogate Decision Making for Children: Who Should Decide?

OBJECTIVE: To identify caregivers' views on preferred surrogate decision makers for their children. STUDY DESIGN: A respondent-anonymous survey was distributed to a convenience sample of adults who accompanied a child to general and subspecialty pediatric care at 2 different institutions or were at the bedside of a child in the pediatric intensive care unit at a third institution in Chicago. RESULTS: We collected 462 valid surveys. The average age of the legal guardian and accompanying child was 36.8 years and 6.6 years, respectively. Most legal guardians designated "other parent with legal authority" as their first choice surrogate decision maker (70%). Respondent's sex, respondent's age, child's age, and child's ethnicity had no effect on first choice surrogate decision maker. "Other parent with legal authority" was less likely to be first choice surrogate if respondents had Medicaid insurance, less than a college degree, or lived in a non-nuclear household (P<.01 for all factors). The surrogacy ladder selected by 31% of legal guardians was "other parent with legal authority," "child's grandparent(s)," and "child's aunt(s) or uncle(s)." No other sequence received more than 10% designation. Study site had no effect on surrogate preference (P = .30). CONCLUSIONS: A surrogacy priority ladder for minors needs to include relatives who are often not included in state surrogacy statutes (eg, grandparents, aunts and uncles). The most popular surrogacy ladder will not be ideal for many families. Parents need to be informed and empowered to choose alternate surrogates, and documented preferences must be easily and widely accessible.

The Pediatrician's Moral Obligation to Counsel Directively Against Youth Tackle Football.

In this issue of The Journal of Clinical Ethics, Professor Ruth Tallman argues that pediatricians ought to support adolescent football players in their athletic goals. She does not deny that doing so means "helping children hurt themselves"; rather she argues that this would be consistent with a shared decision-making model in which both the physician and the patient seek to promote the patient's well-being in light of the patient's own goals. I argue that this ignores the role of the parents, meaning that Tallman is suggesting "helping parents allow their children to hurt themselves." As a general pediatrician, I would classify this as child neglect, if not downright child abuse. I argue that pediatricians should counsel directively against youth tackle football, employ a deliberative approach to shared decision making within the triadic doctor-patient-parent relationship, and support youth sport policies that seek to reduce traumatic brain injury by advocating for flag football, by prohibiting checking in boys' ice hockey, and by minimizing heading the ball in soccer below a certain age.

Abusive Head Trauma and Parental Participation in Pediatric Decision Making.

Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns about the parents' capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child.

Better than Best (Interest Standard) in Pediatric Decision Making.

Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decision making), or both. Those who defend it as only a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child's primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister.

In Further Defense of "Better than Best (Interest)".

In their thoughtful critiques of my article "Better than Best (Interest Standard) in Pediatric Decision Making," my colleagues make clear that there is little consensus on what is (are) the appropriate guidance and intervention principles in pediatric decision making, and disagree about whether one principle can serve both functions. Hester proposes his own unitary principle, the reasonable interest standard, which, like the best interest standard from which it is derived, encourages parents to aim for the great, although Hester tempers it with a pragmatic principle that allows consideration of cultural and family values and practical, financial, social, or psychological circumstances. I reject the aspirational guidance principle because it is too demanding, and I also reject the notion that this pragmatic condition "gives permission for others to extol parents to give reasons" for their decisions, because it allows too much interference into the family and its decision making. Whereas the other respondents and I focus on whether and when third parties should intervene in the doctor-patient (surrogate) relationship, Navin and Wasserman mistakenly redefine intervention to include physicians' behaviors that attempt to influence parents, ignoring the integral role of shared decision making-a bidirectional discussion in which physicians help patients (surrogates) select among reasonable medical options through education, and, when necessary, motivation or persuasion. Diekema and Salter focus on the harm principle for intervention, ignoring other conditions in which intervention may be appropriate and institutions other than the state that may intervene. Paquette's overly narrow interpretation of who has positive obligations to children fails to ensure that a child's basic interests and needs are met. Finally, Bester claims that the "need to choose the available option that best promotes or protects the child's basic interests" is akin to a focus on best interests. But constrained parental autonomy does not require parents to choose the option that best promotes a child's basic interests. Rather, it requires respect for broad parental discretion about how they raise their child unless their decisions fail to promote the child's basic needs and interests.