Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, (...) it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely ‘the embedded child’. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation. (shrink)

We used Discursive Psychology to study the claims and arguments which occur when ‘the child’s best interests’ is produced as a resource in family mediation settings. Analysis draws on data from three pairs of separated or separating parents attempting to resolve child contact or residency disputes through mediation. Our analysis focuses on the tendency of claims to the abstract notion of the child’s best interests to exacerbate conflict, especially as parents drew on conflicting research in this (...) area. Changing expectations of fathering could be observed in the men’s argumentative positioning, and this was taken up in different ways by ex-partners and by mediators. Participants aligned themselves with mediators’ statements by picking up details of mediators’ language, hampering mediators’ attempted neutrality. The problematic nature of acknowledging the intensity of emotions in this process was also highlighted. (shrink)

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here we highlight (...) some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)

In his contribution to the Journal of Medical Ethics, Joseph Mazor1 makes a logical case, based on the premises underlying his reasoning, for his article's primary thesis: he concludes that parents have the prerogative to determine the ‘best interests’ of their infant son in a circumcision decision. If the facts of the matter were ultimately no different from what he adduces, one could admit the soundness of his argument. But the paper is flawed by some questionable assumptions and grievous (...) incompleteness.First, the author insufficiently explores the profound implications of a serious equivocation in the term ‘circumcision’ that is common throughout the literature. He does superficially reference the article on ‘Circumcision’ in The Jewish Encyclopedia, which describes in detail the actual steps involved in brit milah versus brit periah.2 Despite this general allusion, though, he hardly discusses the matter further, as though the distinction were practically irrelevant. It does have fundamental import, however. Milah is merely a token clip of the very tip of the prepuce, which leaves most of the organ system intact. This was evidently the version practiced in biblical times under the old Abrahamic–Mosaic covenant, before the Talmudic guardians of Judaic ethnic and religious identity proposed a means to prevent Hellinising Jewish men from attempting foreskin restoration by stretching their remaining preputial tissue forward. The rabbis mandated the replacement of milah with the more drastic procedure of periah, a radical surgery that cuts and tears from the penis its entire covering, leaving the glans irreversibly denuded. Unlike traditional milah, the innovation of periah necessarily has significant adverse consequences .Second, Mazor concedes that circumcision might cause a ‘moderate’ reduction of sexual pleasure in the lad's …. (shrink)

This paper examines a variety of social scientific studies purporting to demonstrate that transracial adoption is in the best interests of children. Finding flaws in these studies and the ethical and political arguments based upon such scientific findings, we argue for adoption practices and policies that respect the racial and ethnic identities of children of color and their communities of origin.

This article addresses how bodily integrity has been mobilised in the context of genital cutting of male infants and the extent to which the concept is taken into account in legal decision-making in the United Kingdom. While bioethicists have debated whether interventions on children's bodies are more appropriately determined on the basis of hypothetical consent or in the child's best interest, it is clear that in law the relevant test is whether interventions are in the child's best (...) interest. As the issue of nonconsensual genital cutting of infants has become more contested, courts have been asked to adjudicate on the best interests of infants in situations where their caregivers disagree about procedures. Although this body of jurisprudence remains (surprisingly) small, in this article we argue that, while there are now discernible trends in such cases (e.g. deferring decision-making until the child has the requisite capacity to decide, engaging with certain human rights norms), too often judicial reasoning about a child's best interests remains largely empty of reasoned content, and in certain respects is regressing. Using the recent case of Re P to exemplify this logic, and drawing on our previous work advocating the value of embodied integrity, we argue that judges should adopt a more substantive framework of values in judging the child's corporeal and other interests in such cases. This would move best interests assessments beyond a mere formalistic exercise and lead to better reasoned legal judgements. (shrink)

While the substantiation of “best interests” has received much attention, the question of how “the child” is conceptualised to ensure any action taken or decision made is in the particular child’s best interests has been largely neglected. In this paper, I argue that the lack of robust understanding of who “the child” is means that we continue to make many generalisations and category-based assumptions in determining the child’s best interests. In addressing the challenge of doing (...) right by the individual child, I propose a three-step approach based on a theoretical model of the child that avoids presumptions about child-typical needs and insists on an assessment of the child’s individual characteristics, needs, qualities, and circumstances, making it the only conceptualisation fully meeting the child centrism criterion required by children’s rights as determined by the United Nations Convention on the Rights of the Child. (shrink)

The treatment decisions of competent adults, especially treatment refusals, are generally respected. In the case of minors something turns on their age, and older minors ought increasingly to make their own decisions. On the other hand, parents decide on behalf of infants and young children. Their right to do so can best be justified in terms of the importance of preserving intimate family relationships, rather than in terms of the child's best interests, although the child's best interests (...) will most often follow from this arrangement. Nevertheless, there are and ought to be legal, ethical, and financial constraints on parental decision making. (shrink)

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations (...) to parents, and making decisions on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard. (shrink)

Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.

Two of the most poignant decisions in pediatrics concern disagreements between physicians and families over imperiled newborns. When can the family demand more life-sustaining treatment than physicians want to provide? When can it properly ask for less? The author looks at these questions from the point of view of decision theory, and first argues that insofar as the family acts in the child’s best interest, its choices cannot be constrained, and that the maximax and minimax strategies are (...) equally in the child’s best interest. He then proposes a guideline according to which the family can demand LST if it is physiologically possible to preserve a life the child can be expected to welcome, and refuse such treatment if it causes suffering that is “more than can be borne” even if an uncompromised life is expected to emerge. (shrink)

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of (...) Douglas Diekema, John Hardwig, and Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)

This paper argues that Charlie Gard’s parents should have been the decision-makers about their son’s best interests and that determination of Charlie’s best interests depended on a moral decision about which horn of a profound moral dilemma to choose. Charlie’s parents chose one horn of that moral dilemma and the courts, like Charlie Gard’s doctors, chose the other horn. Contrary to the first UK court’s assertion, supported by all the higher courts that considered it, that its judgement was (...) ‘objective’, this paper argues that the judgement was not and could not be ‘objective’ in the sense of objectively correct but was instead a value judgement based on the judge’s choice of one horn of the moral dilemma. While that horn was morally justified so too was the horn chosen by the parents. The court could and should have avoided depriving the parents of their normal moral and legal right and responsibility to decide on their child’s best interests. Instead, this paper argues that the court should have acknowledged the lawfulness of both horns of the moral dilemma and added to its judgement that Charlie Gard’s doctors were not legally obliged to provide treatment that they believed to be against their patient’s best interests the additional judgement that Charlie’s parents could lawfully transfer his care to other doctors prepared to offer the infant a trial of the experimental treatment requested by his parents. (shrink)

This paper advances a novel conception of the child’s best interest in regard to pediatric surgeries that do not promote the preventive or therapeutic health needs of children, or elective pediatric surgeries (EPS). First, children’s capacity for decision-making is examined, and the best decision-making model for EPS is identified as the Best Interest Standard. What follows is a discussion of the interests of children in the context of EPS, the correlation of fundamental interests to (...) rights, and guidelines for weighing children’s competing interests. Next, the rights and duties of parents as proxy decision makers are considered. Finally, a reinterpretation of the Best Interest Standard is proposed, identifying as paramount a child’s ability to make elective medical decisions for herself when she reaches maturity. (shrink)

The principle of the best interests of children must be the main consideration in adjudicating applications for marriage dispensation. However, its implementation becomes problematic when faced with provisions on the ability to grant marriage dispensations for urgent reasons. This article examines how the best interests of children are implemented in legal applications for marriage dispensation in religious court. It employs a socio-legal approach with a maqāsid al-syarī'ah cum-mubadalah perspective. This article proposes that the principle of the best (...) interests of children is yet considered by judges effectively in deciding the cases. This does not reflect the protection of the child’s life, heredity, intellect, property, and religion, and does not consider the unique experiences of women both biologically and socially. Judges have a biased perspective in measuring the meaning of maturity and readiness of girls to marry, ignoring children's rights in education and reproductive health, and subordinate women in the spiritual realm. (shrink)

In recent years, decision-making processes related to medical practices have undergone a change from physician paternalism towards patient autonomy. However, it has been put forward that this situation has changed into or strengthened the parent paternalism for children. Parental paternalism might bring along decisions of refusing the child’s treatment, in such a way to occasionally violate the health right of the child. Paternalistic attitude of parents may also cause physicians to direct towards defensive medicine practices and to display a (...) tendency of avoiding legal liability rather than the benefit of the patient. Coming to the decision of the parent on refusing the child’s treatment together defensive medicine approach of the physician and an environment, where the legal protection mechanisms for the child are not efficient enough, causes serious violations of health rights. International contracts and national law require the protection of the child’s best interest in all cases. In that case, parent’s decision on refusing treatment of the child should be restricted within the scope of the child’s best interest and healthy life right. (shrink)

In the context of critically ill children, Baines contended that the best interests test was neither objective nor coherent, and thus of little applicability in making end-of-life decisions. In reply, Bridgeman attempted to refute these claims through legal analysis and contended that the doctrine allowed for responsive, fact-specific, context-sensitive and prudential reasoning. This paper is a response to Bridgeman, and argues that an examination of case law reveals the subjective and value-laden nature of the test. Courts must make decisions (...) in contested cases, but there is no reason to hold that a judge can divine the best interests of a critically ill child better than either parents or medical staff. This paper analyses a number of cases where judicial decisions appear at odds with the child's best interests, and argues that as the outcome depends upon the value system of the decision-maker the test is unhelpful in contested end-of-life cases. (shrink)

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. (...) With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

On what basis should we judge whether a parent’s medical decision for their child is morally acceptable? In a recent article, Johan Bester attempts to answer this question by defending a version of the Best Interest Standard for parental decision making. The purpose of this paper is to identify a number of problems faced by Bester’s version of BIS and to suggest ways to redress these problems. Accordingly, we intend to advance the project of formulating a method for (...) guiding parents’ medical decision making for their children. We argue that Bester’s standard fails to accommodate the autonomy of the child and that his criteria for assessing the reasonableness of the parents’ argument for their decision is too weak. We conclude that properly addressing these worries renders his test otiose and that it ought to be replaced with the three commonly held principles of bioethics—the principles of autonomy, beneficence, non-maleficence—and a standard of reasonableness. (shrink)

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as (...) follows: thepotentiality principle, whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

I will consider how we can assess the interests of critically ill children who will survive only while aggressive medical support is continued. If aggressive medical support is withdrawn, the child will die shortly afterwards. This is important because when the courts are asked to decide treatments, the standard is that decisions should be made in the best interests of the child. My claim is that this is not a coherent way to consider how some children in this situation (...) should be treated. I will consider two separate aspects of this problem. First, I will argue that there is no objective best interests test and no immediate prospect that we will be able to develop one. Secondly, I will argue that best interests are not a coherent way to consider the interests of children who will die shortly after treatment is withdrawn. To reinforce this claim, I will describe an example of two children where acting in the child's best interests produces counter-intuitive conclusions. (shrink)

The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States professional guidelines — both the American College of Medical (...) Genetics /American Society of Human Genetics statement and the American Academy of Pediatrics Statement on the genetic testing of children and the new AAP and ACMG joint policy statement and technical report — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society and the new United Kingdom guidelines by the British Society of Human Genetics all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest. (shrink)

This article considers two competing types of conceptions of the pre-autonomous child’s right to bodily integrity. The first, which I call encroachment conceptions, holds that any physically serious bodily encroachment infringes on the child’s right to bodily integrity. The second, which I call best-interests conceptions, holds that the child’s right to bodily integrity is infringed just in case the child is subjected to a bodily encroachment that substantially deviates from what is in the child’s (...) class='Hi'>best interests. I argue in this article that best-interests conceptions are more plausible than encroachment conceptions. They have more attractive implications regarding the permissibility of interventions in children’s bodies that are beneficial for the child but are not medically necessary. They are better able to explain the moral distinction between cases in which an encroachment on a child’s body is needed to benefit that child and cases in which an encroachment on one child’s body is needed to benefit another. Finally, best-interests conceptions are more consonant than encroachment conceptions with our understanding of adults’ right to bodily integrity. (shrink)

The notion of the best interest of children figures prominently in family and reproductive policy discussions and there is a considerable body of empirical research attempting to connect the interests of children to how families and society interact. Most of this research regards the effects of societal responses to perceived problems in families, thus underlying policy on interventions such as adoption, foster care and temporary assumption of custodianship, but also support structures that help families cope with various challenges. (...) However, reference to the best interest of children can also be applied to a more basic issue in family policy, namely that of what is to be considered a family in the first place. This issue does not raise any questions regarding the proper conditions for when society should intervene in or change the family context of a child. Rather, it is about what social configurations should be recognized as a potentially fitting context for children to enter into and (if all goes well) eventually develop into adulthood within /.../ such that society’s default institutional arrangements allow it to have (by sexual and artificial reproduction, adoption, and combinations of these), care for and/or guard children. [This] will frame any further discussion of /.../ policies having further implications for, for example, the practices of adoption and reproductive technology, as well as regulation of custody in the event of separation or parental disagreement. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this (...) article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (shrink)

This article critically examines, and ultimately rejects, the best interest standard as the predominant, go-to ethical and legal standard of decision making for children. After an introduction to the presumption of parental authority, it characterizes and distinguishes six versions of the best interest standard according to two key dimensions related to the types of interests emphasized. Then the article brings three main criticisms against the best interest standard: (1) that it is ill-defined and inconsistently (...) appealed to and applied, (2) that it is unreasonably demanding and narrow, and (3) that it fails to respect the family. Finally, it argues that despite the best interest standard’s potent rhetorical power, it is irreparably encumbered by too much inconsistency and confusion and should be rejected. (shrink)

Douglas Diekema influentially argues that interference with parental decisions is not in fact guided by the child’s best interests, but rather by a more permissive standard, which he calls the harm principle. This article first seeks to clarify this alternative position and defend it against certain existing criticisms, before offering a new criticism and alternative. This ‘harm principle’ has been criticized for (i) lack of adequate moral grounding, and (ii) being as indeterminate as the best interest (...) standard that it seeks to replace. I argue that these are not serious problems. I take Diekema’s negative point to be right—our actual standard for intervention is not literally the best interests of the child—but I disagree with his proposed replacement. First, Diekema’s proposed harm threshold should be more carefully distinguished from Mill’s harm principle. Second, there is no reason to assume that the standard for permissible intervention coincides with the threshold for harm (or serious harm). Thus, I propose that the best alternative to the best interests standard is not a harm principle, but rather a sufficiency threshold between adequate (or ‘good enough’) and inadequate (or ‘substandard’) parenting. (shrink)

ERRATUMWe regret that, due to a technical error, the uncorrected version of Angus Dawson's article was printed in 19:1. We apologise to the author and reprint in full the corrected version of the paper on the following pages. A. Dawson et al.. Bioethics 2005; 19: 72–89. ABSTRACTThere are many different ethical arguments that might be advanced for and against childhood vaccinations. In this paper I will explore one particular argument that focuses on the idea that childhood vaccinations are justifiable because (...) they are held to be in the best interests of a particular child. Two issues arise from this idea. The first issue is how best interests are to be determined in the case of childhood vaccinations. The second issue is what follows from this to justify potential interventions within the family in relation to such vaccinations. I argue that best interests must be characterised objectively in such situations and that this means that, in at least some cases, parental decision‐making about vaccinating their children may be overridden. (shrink)

In an earlier paper I argued that we do not have an objective conception of best interests and that this is a particular problem because the courts describe that they use an ‘…objective approach or test. That test is the best interests of the patient’ when choosing for children. I further argued that there was no obvious way in which we could hope to develop an objective notion of best interests. As well as this, I argued that (...) a best-interest-based approach was a particular problem around the time of death of some children. A response from a legal perspective argued that, while there is not a clear conception of objective best interests, the courts have a well-described approach to finding a child's objective best interests. In this paper, I argue that without clear agreement on an objective conception of best interests, the courts are unable to locate an objective sense of best interests and that the solutions do not solve the problems that were identified in the initial paper ‘Death and best interests’. (shrink)

The existing ethico-legal regulation of adolescent children's participation in health research in South Africa is currently unclear. The article interrogates the existing framework governing children's consent to research participation, with specific emphasis on discrepancies in consent norms in law and ethical guidelines. Against the backdrop of the constitutional directive that requires that a child's best interests are of paramount importance in every matter concerning the child, the article assesses whether sufficient consideration is given to children's evolving maturity and capacities (...) when consent to their participation in health research is sought. The article provides specific recommendations and proposes a legislative change to consent provisions in the National Health Act 61 of 2003 in order to address the existing lacunae and to align the framework with constitutional imperatives and international fundamental rights considerations. (shrink)

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. (shrink)

J S Mill used the term ‘dead dogma’ to describe a belief that has gone unquestioned for so long and to such a degree that people have little idea why they accept it or why they continue to believe it. When wives and children were considered chattel, it made sense for the head of a household to have a ‘sovereignal right’ to do as he wished with his property. Now that women and children are considered to have the full complement (...) of human rights and slavery has been abolished, it is no longer acceptable for someone to have a ‘right’ to completely control the life of another human being. Revealingly, parental rights tend to be invoked only when parents want to do something that is arguably not in their child's best interest. Infant male circumcision is a case in point. Instead of parental rights, I claim that parents have an obligation to protect their children's rights as well as to preserve the future options of those children so far as possible. In this essay, it is argued that the notion that parents have a right to make decisions concerning their children's bodies and minds—irrespective of the child's best interests—is a dead dogma. The ramifications of this argument for the circumcision debate are then spelled out and discussed. (shrink)

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. (shrink)

What ethically justifies the provision of invasive and irreversible treatments to minors? In this commentary, I examine this question in response to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?,” which critiques autonomy‐based arguments for justification of gender‐affirming care in minors. Minors generally lack sufficient autonomy to make significant medical decisions or major life decisions. For this reason, parents are generally their decision‐makers, working with medical professionals to choose treatments that serve the best interests of the (...) minor. Medical care in minors is justified by beneficence, not autonomy, and this should be no different for gender‐affirming care. This severely undermines autonomy‐based arguments for provision of gender‐affirming care to minors. Given the lack of conclusive evidence for benefit, the nature of the treatment, and the fact that gender dysphoria in minors resolves spontaneously in most cases, there is presently insufficient justification for provision of such care to minors. (shrink)

How should liberal-democratic governments deal with emerging vaccination hesitancy when that leads to the resurgence of diseases that for decades were under control? This article argues that vaccination policies should be justified in terms of a proper weighing of the rights of children to be protected against vaccine-preventable diseases and the rights of parents to raise their children in ways that they see fit. The argument starts from the concept of the ‘best interests of the child involved’. The concept (...) is elaborated for this context into the dual regime structure in which parents have fiduciary authority over what they consider to be best for their child, and the state has fiduciary authority over a child’s basic interests. This argument leads to conditional mandatory vaccination programs that should be informed by a correct balancing of the two legal principles of proportionality and precaution. This results in contextual childhood vaccination policies of upscaling interference: a three-tiered approach of increased intrusion, from voluntary program when possible and mandatory or even compulsory programs when necessary to protect the child’s basic interests. (shrink)

The maxim “parents should do what is in the best interests of their child” seems like an unassailable truth, and yet, as I argue here, there are serious problems with it when it is taken seriously. One problem concerns the sort of demands such a principle places on parents; the other concerns its larger social implications when conceived as part of a national policy for the rearing of children. The theory of parenting that creates these problems I call “optimizing (...) parentalism.” To avoid them, I define and defend a new and more morally appealing theory, “satisficing parentalism.”. (shrink)

In this issue of Clinical Ethics, Jonathan Pugh rejects hypothetical consent-based conceptions of the child’s right to bodily integrity (RBI). Pugh also questions the relevance of adults’ regret of past bodily infringements in evaluating potential violations of children’s RBI. Pugh then argues that autonomy serves as the justification for our power to waive our bodily rights. Finally, Pugh claims that the child’s interest in developing the capacity for autonomy is key to evaluating potential RBI violations. In this (...) article, I challenge each of these arguments. First, I argue that it is the circumstances of parents vis-a-vis their children (rather than the difficulties in determining hypothetical agents' values) that should lead us to reject hypothetical-consent-based conceptions of the child’s RBI in favor of best-interests conceptions. Second, I argue that adults’ regret of childhood bodily interventions is highly relevant for evaluating these interventions’ permissibility. Third, I reject the claim that autonomy is the primary justification for our power to waive our bodily rights. Finally, I argue that Pugh overstates the importance of the child’s interest in developing the capacity for autonomy, at least when it comes to debates in contemporary liberal democracies over interventions in children’s bodies. (shrink)

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is (...) still very common in clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

Federal efforts beginning in the 1990's have successfully increased pediatric research to improve medical care for all children. Since 1997, the FDA has requested 800 pediatric studies involving 45,000 children. Much of this research is "non-beneficial"; that is, it exposes pediatric subjects to risk even though these children will not benefit from participating in the research. Non-beneficial pediatric research (NBPR) seems, by definition, contrary to the best interests of pediatric subjects, which is why one state supreme court has essentially (...) prohibited it. It also appears that the only plausible rationale for this research is utilitarian, as it risks some children for the good of all. But that rationale is troubling. This Article answers two related questions: (1) What is the appropriate legal relationship between NBPR and the "best interests of the child" standard? (2) What is the ethical justification for this research? I argue that courts should hold that the "best interests" standard governs pediatric research. But, contrary to existing case law, courts must consider the benefits to each child, including pediatric subjects, from a policy that permits NBPR, and not simply consider that a non-beneficial protocol presents more risk than potential benefit to a child. Moreover, I argue that the justification for the practice need not be utilitarian. There is no need to appeal to the greater good to justify the research because each child has reason to endorse a policy permitting NBPR where there is a very low ceiling on acceptable risk, and each child has reason to participate in a practice from which she benefits. More controversially, I argue that each child, like other persons, has reason to help others when she can do so at little to no cost to herself. The Article then highlights practical implications of the offered justifications. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public (...) policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high (as is the case for questions about withdrawing life-sustaining therapy from infants over parental objections), use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

In our dealings with young children, we often get them to do or think things by arranging their environments in certain ways; by dissembling, simplifying, or ambiguating the facts in answer to their queries; by carefully selecting the states of affairs, behavior of others, and utterances to which they shall be privy. We rightly justify these practices by pointing out a child's malleability, and the necessity of paying close attention to formative influences during its years of growth. This filtering of (...) influences is necessary, we point out, if children are ever to reach a degree of maturity and inner stability that will enable them to understand and cope adequately with the complexities, contradictions, and difficulties of the world from which we now seek to shield them. Thus a child's eventual state of competence, maturity, and autonomy adequately justifies our current practices of manipulation and selection of his environment: such practices are rightly held to be ultimately in the child's best interests as an adult. There is no future state of things with reference to which the Utilitarian night justify his policy of secrecy and manipulation, and in light of which this policy night eventually be dispensed with and commonly validated, in retrospect, as a means to the worthwhile goal of moral maturity. That is, there is no point at which the attitude of the Utilitarian to the rest of the community can develop past the analogous attitude of the parent towards the child; no point at which the Utilitarian might eventually bear to others a relationship of mutual acknowledgement and respect as mature, autonomous, moral adults. The consistent Utilitarian, then, largely regards himself as if he were the only adult in a community of children. (shrink)

This qualitative study analysed the agency of eight non-abusing mothers in the Turkish Cypriot Community after disclosure that their child had been sexually abused by someone outside the family. The aim was to discover how, after disclosure, such mothers act to protect their children in the contexts of their family and community. The data were gathered via semi-structured in-depth interviews and analysed using Interpretative Phenomenological Analysis. In the nuclear family context, maternal agency emerged in the form of motherhood skills, including (...) emotionally supporting the abused child, double-checking the child’s safety or limiting the child’s mobility, and controlling the actions of adult sons. In the community context, maternal agency was manifested in efforts to prevent men in the extended family or the abuser’s family from concealing the abuse and to obtain informal support from others such as birth or extended family members. The women were usually successful in hiding their reactions or making decisions in their children’s best interest despite frequently having to cope with the reality of living in a restrictive and patriarchal culture. The results emphasise the need for working with the general public and professionals to change the culture of silence and to improve the social support network for sexually abused children and non-abusing family members, especially mothers. (shrink)

When children are too young to make their ownautonomous decisions, decisions have to be madefor them. In certain contexts we allow parentsand others to make these decisions, and do notinterfere unless the decision clearly violatesthe best interest of the child. In othercontexts we put a priori limits on whatkind of decisions parents can make, and/or whatkinds of considerations they have to take intoaccount. Consent to medical research currentlyfalls into the second group mentioned here. Wewant to consider and ultimately (...) reject one ofthe arguments put forward for putting medicalresearch into the second category. We willargue that some objections to children'sparticipation in research are either based onan implausibly restrictive conception of whatis in fact in the child's best interests orthat there is an implicit and false premisehidden in this argument; i.e., the premise thatour children have so deeply fallen into moralturpitude that we must assume that they wouldnot want to fulfill their moral obligations,or, that they will grow up to be morallydeficient and will then wish not to have actedwell while a child. (shrink)

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

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. (shrink)