Lainie Ross

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making.

ABSTRACT I argue that parents ought to be allowed to authorize their child's participation as an organ donor for another family member. I introduce a model of decisionmaking for children in intimate families which I call Constrained Parental Autonomy. This model permits wide parental discretion which is constrained absolutely by a broadly defined principle of respect for persons. In general, parental authorization alone is sufficient but I argue that the respect for persons constraint prevents certain donations and requires the child's assent for other donations. I also consider two controversial implications of the application of this model: the objection that the model does not respect the child's right to bodily integrity, and the objection that the model does not and is unable to address intrafamilial disgreement.

ABSTRACT In 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that the Committee's conclusion in favour of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed.

Zusammenfassung Das Neugeborenen-Screening (NBS) ist ein koordiniertes und umfassendes Programm der öffentlichen Gesundheitspflege, das die Aufklärung von Eltern und Dienstleistern, die Entnahme von Trockenblutproben, die Testung und Nachsorge der Patienten, die Nachverfolgung der gesundheitlichen Ergebnisse, sowie die Qualitätssicherung und Evaluierung des Programms umfasst. Ursprünglich wurde dieses Programm entwickelt, um Säuglinge zu identifizieren, bei denen ein Risiko für schwerwiegende Erkrankungen besteht, die bereits im Säuglingsalter auftreten und bei denen eine frühzeitige Diagnose zu einer Behandlung führen kann, welche die Morbidität und Mortalität verringert. Obwohl man mit dem NBS auf Phenylketonurie bereits begonnen hatte, bevor 1968 die von Wilson und Jungner (W&J) verfassten internationalen Leitlinien für das Screening im öffentlichen Gesundheitswesen veröffentlicht wurden, entwickelten sich diese Leitlinien schnell zur Rechtfertigungsgrundlage für ein universelles Screening. Die W&J-Leitlinien konzentrierten sich dabei auf die Erkennung von Krankheiten in einem frühen oder präsymptomatischen Stadium, die eine sofortige Behandlung erfordern, um Morbidität oder Mortalität zu verringern oder zu verhindern. Da für jede neu aufgenommene Krankheit zunächst ein eigener Test erforderlich war, schritt die Ausweitung der NBS-Programme anfangs nur langsam voran. Dies änderte sich jedoch mit der Tandem-Massenspektrometrie, einer Plattformtechnologie, die das Screening mehrerer Erkrankungen mit einem einzigen Test ermöglichte. Mehr noch als die MS/MS bergen nun auch die Exom-Sequenzierung (ES) und die Ganz-Genom-Sequenzierung (WGS) von Neugeborenen das Potenzial, viele Erkrankungen mit nur einer einzigen Plattformtechnologie zu diagnostizieren. Die mögliche Erweiterung des NBS um ES oder WGS stellt jedoch einen Paradigmenwechsel dar, da so nicht nur die Erkrankungen identifiziert werden können, die in den traditionellen NBS-Programmen enthalten sind, sondern auch Erkrankungen, die erst nach dem Säuglingsalter auftreten, nicht behandelbar sind und/oder einen variablen Schweregrad aufweisen. Im vorliegenden Text entwickle ich vier Einwände gegen die Aufnahme einer routinemäßigen Sequenzierung von Neugeborenen in das NBS: 1) ein Genotyp findet nicht unbedingt immer auch phänotypischen Ausdruck; 2) ein Phänotyp lässt sich nicht immer auf einen bekannten Genotyp zurückführen; 3) die Identifizierung von mehr Erkrankungen ist nicht unbedingt besser; und 4) ein Screening als Teil der öffentlichen Gesundheitspflege sollte Ungleichheiten verringern und nicht verschärfen. Diese vier Einwände gegen die routinemäßige Sequenzierung von Neugeborenen zeigen, dass der Nutzen einer entsprechenden Erweiterung des Screenings die Schäden, Kosten und Risiken nicht eindeutig überwiegt. Die Beweislast dafür, dass ein positives Nutzen-Risiko-Verhältnis zu erwarten ist, liegt bei den Befürwortern dieser Erweiterung. Lässt sich eine solche Erwartung nicht hinreichend durch Evidenz belegen, sollte die routinemäßige Sequenzierung Neugeborener nicht Bestandteil eines öffentlichen, universellen NBS-Programms werden.

Background Newborn screening (NBS) is a coordinated and comprehensive public health program that includes parent and provider education, the collection of dried blood spot specimens, testing and patient follow-up, outcome tracking, and quality improvement and program evaluation. It was initially developed to identify infants at risk for serious conditions that presented in infancy for which early diagnosis could lead to treatment that would reduce morbidity and mortality. Although NBS for phenylketonuria began before the Wilson and Jungner (W&J) international public health screening guidelines were promulgated in 1968, these guidelines became the backbone for justifying universal screening. The W&J guidelines focused on identifying conditions at an early or presymptomatic stage that require immediate treatment to reduce or prevent morbidity or mortality. Initially, NBS expanded slowly because each condition required its own test, but this changed with tandem mass spectrometry, a platform technology that allowed for screening of multiple conditions with one test. Even more than MS/MS, exome sequencing (ES) or Whole Genome Sequencing (WGS) of newborns has the potential to diagnose many disorders with a single platform technology. Arguments The inclusion of ES or WGS as part of NBS represents a paradigm shift as it would not only identify conditions included in traditional NBS programs but also conditions that present beyond infancy, are not treatable, and/or have variable severity. In this manuscript, I provide 4 critiques against expanding NBS to include routine newborn sequencing: 1) genotype does not necessarily translate into phenotype; 2) phenotype does not always translate into known genotype; and 3) identifying more conditions is not necessarily better; and 4) public health screening should reduce not exacerbate disparities. Conclusion The four critiques against routine newborn sequencing show that the benefits do not clearly outweigh the harms, costs and risks. Supporters must provide evidence of a positive benefit-to-risk ratio. If not, sequencing should not be conducted as part of a universal NBS public health program.

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.

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.

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.

In transplant medicine, the use of normothermic regional perfusion (NRP) in donation after circulatory determination of death raises ethical difficulties. NRP is objectionable because it restores the donor's circulation, thus invalidating a death declaration based on the permanent cessation of circulation. NRP's defenders respond with arguments that are tortuous and factually inaccurate and depend on introducing extraneous concepts into the law. However, results comparable to NRP's—more and higher‐quality organs and more efficient allocation—can be achieved by removing organs from deceased donors and using normothermic machine perfusion (NMP) to support the organs outside the body, without jeopardizing confidence in transplantation's legal and ethical foundations. Given the controversy that NRP generates and the convoluted justifications made for it, we recommend a prudential approach we call “ethical parsimony,” which holds that, in the choice between competing means of achieving a result, the ethically simpler one is to be preferred. This approach makes clear that policy‐makers should favor NMP over NRP.

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, crosssectional 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.

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/family values and practical/financial/social/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 when 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 their basic interests and needs are met. Finally, Bester claims the “need to choose the available option that best promotes or protects the child’s basic interests” is akin to a focus on best interest. But constrained parental autonomy does not require parents to choose the option that best promotes their 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.

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 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 doctorpatient- 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.

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.