Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (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)

This paper reviews the ethical literature on conflicts between health professionals and parents about medical decision-making for children. We present the results of a systematic review which addressed the question ‘when health professionals and parents disagree about the appropriate course of medical treatment for a child, under what circumstances is the health professional ethically justified in overriding the parents’ wishes?’ We identified nine different ethical frameworks that were put forward by their authors as applicable across various ages and clinical scenarios. (...) Each of these frameworks centred on a different key moral concept including harm, constrained parental autonomy, best interests, medically reasonable alternatives, responsible thinking and rationality. (shrink)

Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents (...) are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as “mature” and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. (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)

Expert analysis is indispensable, especially in medical decision making, because it helps both physicians and patients in making rational decisions. In fact, medical expertise is the very reason pe...

This paper examines the ethicalproblems that arise when research is carriedout after autopsy on dead infants. It comparesthe right of parents against that of the publicinterest in matters of research on dead minors. The basis for the respect that is widelyaccorded to the body of a dead person isexamined and is shown to ground the parentalinterest. A discussion of the nature of thefamily suggests that `informed consent' is notthe best term to apply to the process ofparental consultation. Some reasons areprovided (...) against using this term in the contextin which bereaved parents are consulted aboutautopsy and research on their dead infants. Itis suggested that a term such as `authorize'might better apply to this situation. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

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

In Bester’s article (2018) challenging the use of the harm principle and advocating sole reliance on the use of a best interest standard (BIS) in pediatric decision-making, we believe that the auth...

The case of Charlie Gard, an infant with a genetic illness whose parents sought experimental treatment in the USA, brought important debates about the moral status of parents and children to the public eye. After setting out the facts of the case, this article considers some of these debates through the lens of parental rights. Parental rights are most commonly based on the promotion of a child’s welfare; however, in Charlie’s case, promotion of Charlie’s welfare cannot explain every fact of (...) the case. Indeed, some seem most logically to extend from intrinsic parental rights, that is, parental rights that exist independent of welfare promotion. I observe that a strong claim for intrinsic parental rights can be built on arguments for genetic propriety and children’s limited personhood. Critique of these arguments suggests the scope of parental rights remains limited: property rights entail proper use; non-personhood includes only a small cohort of very young or seriously intellectually disabled children and the uniqueness of parental genetic connection is limited. Moreover, there are cogent arguments about parents’ competence to make judgements, and public interest arguments against allowing access to experimental treatment. Nevertheless, while arguments based on propriety may raise concerns about the attitude involved in envisioning children as property, I conclude that these arguments do appear to offer a prima facie case for a parental right to seek experimental treatment in certain limited circumstances. (shrink)

A growing number of bioethics papers endorse the harm threshold when judging whether to override parental decisions. Among other claims, these papers argue that the harm threshold is easily understood by lay and professional audiences and correctly conforms to societal expectations of parents in regard to their children. English law contains a harm threshold which mediates the use of the best interests test in cases where a child may be removed from her parents. Using Diekema9s seminal paper as an example, (...) this paper explores the proposed workings of the harm threshold. I use examples from the practical use of the harm threshold in English law to argue that the harm threshold is an inadequate answer to the indeterminacy of the best interests test. I detail two criticisms: First, the harm standard has evaluative overtones and judges are loath to employ it where parental behaviour is misguided but they wish to treat parents sympathetically. Thus, by focusing only on ‘substandard’ parenting, harm is problematic where the parental attempts to benefit their child are misguided or wrong, such as in disputes about withdrawal of medical treatment. Second, when harm is used in genuine dilemmas, court judgments offer different answers to similar cases. This level of indeterminacy suggests that, in practice, the operation of the harm threshold would be indistinguishable from best interests. Since indeterminacy appears to be the greatest problem in elucidating what is best, bioethicists should concentrate on discovering the values that inform best interests. (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)

Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention as such. It has (...) been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Newborn screening consists of taking a few drops of blood from a baby's heel in the first week of life and testing it for a list of disorders. In the United States and most countries in Europe, newborn screening programs began in the 1960s and 1970s with screening for phenylketonuria (PKU), a rare metabolic disease that causes severe and irreversible mental retardation unless treated before problems arise. As knowledge about rare diseases expanded and new screening technologies were introduced—such as the (...) tandem mass spectrometer and high‐performance liquid chromatography—the same blood sample could be used to test for a whole list of disorders. In general, screening programs in most countries have tended to expand, but in different countries they have expanded in different ways. Regulation also varies. In some states, screening is mandatory, whereas in others—Wyoming and Maryland—parents are asked for their informed consent. Germany and France have adopted an explicit informed consent procedure, whereas other European countries have a more informal “opt‐out” procedure that does not require signing an informed consent form. Whether newborn screening requires informed consent is an ongoing issue in bioethics. In this article, we will focus on the tension between informed consent and the problem of compliance in newborn screening. Asking for informed consent—allowing parents to opt out—is often thought to pose a threat to compliance. Building on the work of Onora O'Neill on informed consent and trust, however, as well as on work she coauthored with Neil Manson, we will argue that informed consent procedures may actually help maintain trust in newborn screening and may therefore support compliance. (shrink)

Parents are usually appreciated as possessing legitimate moral authority to compel children to make at least modest sacrifices in the service of widely shared values of moral decency. This essay argues that such authority justifies allowing parents to authorize a child to serve as an organ or tissue donor in certain circumstances, such as to authorize bone marrow donations to save a sibling with whom the potential donor shares a deep emotional bond. The approach explored here suggests, however, that at (...) least under some conditions, parents have legitimate authority to authorize donations forbidden by current guidelines. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 42-50, January/February 2022.

Caregivers should usually accede to parents’ requests for life-sustaining treatment. For such decision-making, the best interests standard is too limited. John Arras’s “relational potential standard,” con-joined to a contemporary care ethics framework, provides a better guide.

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...) questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a “think list” of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution. (shrink)

Olszewski and Goldkind (2018) correctly point out that including children in medical decision making ought to be the default position for clinicians. Recognizing the challenges this position poses,...

This thesis is a contribution to the ethical justification for clinical research with children. A research subject’s participation in a trial is usually justified, in part, by informed consent. Informed consent helps to uphold the moral principle of respect for persons. But children’s limited ability to make informed choices gives rise to a problem. It is unclear what, if anything, justifies their participation in research. Some research ethicists propose to resolve this problem by appealing to social utility, proxy consent, arguments (...) explaining why it is permissible to expose children to some harm, and an argument concerning the appropriate balance between research harms and benefits. I argue that each of these is a necessary part of the justification for research with children, but that the argument concerning harms and benefits is under-developed. It relies on the concept of minimal risk, but minimal risk is inadequately justified. I propose an interpretation of minimal risk. I defend the idea that minimal risk should be interpreted according to the risks of daily life. I reject the most prominent defense of daily life, which claims that daily risks are morally relevant because they replace, rather than add to, the risks a child would ordinarily face. Instead, I propose that these risks are part of a reasonable trade-off between personal safety and our ability to pursue meaningful lives. I then examine whose daily life should be captured in the concept of minimal risk. I reject arguments that minimal risk should refer to healthy children or the subjects of the research and propose instead that the referent should be children who are not unduly burdened by their lives. I argue that children are not unduly burdened when they fare well and defend the idea that children fare well when they possess sufficiently high degrees of the substantive goods of childhood. I conclude by analyzing a controversial case study using my interpretation of minimal risk. I draw on this case to argue that my interpretation offers clear guidance for research ethics review and contributes to a determination that is more plausible than its rivals. (shrink)

Decisions regarding clinical procedures or research participation typically require the informed consent of individuals. When individuals are unable to give consent, the informed permission of a legally authorized representative or surrogate is required. Although many proposed procedures are aimed primarily at benefiting the individual, some are not. I argue that, particularly when individuals are asked to assume risks primarily or exclusively for the benefit of others, family members ought to be engaged in the informed consent process. Examples of procedures in (...) which individuals are asked to assume risks primarily or exclusively for the benefit of others include living organ donation and research participation. (shrink)

Die allogene Transplantation von Blutstammzellen aus dem Körper von Kindern, die der Spende nicht selbst zustimmen können, in den Körper eines kranken Geschwisterkindes wirft schwierige ethische Fragen auf. Wie kann ein risikobehafteter, fremdnütziger medizinischer Eingriff ethisch gerechtfertigt werden? In dieser Arbeit werden Argumente kritisch untersucht, nach denen das Spenderkind eine Pflicht habe, bei der Transplantation mitzumachen. Die Idee der Pflicht ist nachvollziehbar aus der Perspektive der Eltern, die zwar in einem Fürsorgekonflikt sind (ein Kind zu Gunsten der Rettung des anderen (...) verletzen zu müssen), aber selbst eine Pflicht haben, für das Leben des kranken Kindes zu kämpfen. Eine Analyse des Pflichtbegriffs zeigt jedoch, dass die Erfüllung einer Pflicht daran gebunden ist, entscheidungskompetent zu sein. Drei Wege werden untersucht, eine solche Pflicht dennochzuzuschreiben: i) die Eltern übertragenihre Pflicht auf das Kind; ii) die Interessen des Spenderkindes implizieren eine Pflicht; iii) Geschwisterkinder haben aufgrund ihrer vertrauten Familienbeziehungen Pflichten untereinander, die auch die Pflicht zu spenden beinhalten. Alle drei Zuschreibungsstrategien werden als unhaltbar kritisiert. Das Ergebnis lautet, dass die Pflicht, einem Geschwisterkind Körpergewebe zu spenden, einem nicht-einwilligungsfähigen Kind nicht zugeschrieben werden kann. Andere philosophische Ansätze zur Stammzellspende von Kindern an Familienangehörige müssten entwickelt und geprüft werden. (shrink)

Die allogene Transplantation von Blutstammzellen aus dem Körper von Kindern, die der Spende nicht selbst zustimmen können, in den Körper eines kranken Geschwisterkindes wirft schwierige ethische Fragen auf. Wie kann ein risikobehafteter, fremdnütziger medizinischer Eingriff ethisch gerechtfertigt werden? In dieser Arbeit werden Argumente kritisch untersucht, nach denen das Spenderkind eine Pflicht habe, bei der Transplantation mitzumachen. Die Idee der Pflicht ist nachvollziehbar aus der Perspektive der Eltern, die zwar in einem Fürsorgekonflikt sind (ein Kind zu Gunsten der Rettung des anderen (...) verletzen zu müssen), aber selbst eine Pflicht haben, für das Leben des kranken Kindes zu kämpfen. Eine Analyse des Pflichtbegriffs zeigt jedoch, dass die Erfüllung einer Pflicht daran gebunden ist, entscheidungskompetent zu sein. Drei Wege werden untersucht, eine solche Pflicht dennochzuzuschreiben: i) die Eltern übertragenihre Pflicht auf das Kind; ii) die Interessen des Spenderkindes implizieren eine Pflicht; iii) Geschwisterkinder haben aufgrund ihrer vertrauten Familienbeziehungen Pflichten untereinander, die auch die Pflicht zu spenden beinhalten. Alle drei Zuschreibungsstrategien werden als unhaltbar kritisiert. Das Ergebnis lautet, dass die Pflicht, einem Geschwisterkind Körpergewebe zu spenden, einem nicht-einwilligungsfähigen Kind nicht zugeschrieben werden kann. Andere philosophische Ansätze zur Stammzellspende von Kindern an Familienangehörige müssten entwickelt und geprüft werden. (shrink)

The participation of minors in clinical trials is essential to provide safe and effective medical care to children. Because few drugs have been tested in children, pediatricians are forced to prescribe medications off-label with uncertain efficacy and safety. In this article, we analyze how the enrollment of minors in clinical trials is negotiated within relationships of mutual trust between clinicians, minors, and their parents. After a brief description of the problems associated with involving minors in clinical research, we consider how (...) existing “relationships of trust” can be used as a place where the concerns of research subjects can be more fully discussed and addressed. Building on the tacit recognition of trust found in The European Clinical Trials Directive we make policy recommendations that allow for clearer, more ethically informed guidelines for enrolling minors in clinical research. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Some children living with life-shortening medical conditions may wish to attend school without the threat of having resuscitation attempted in the event of cardiopulmonary arrest on the school premises. Despite recent attention to in-school do-not-attempt-resuscitation (DNAR) orders, no assessment of state laws or school policies has yet been made. We therefore sought to survey a national sample of prominent school districts and situate their policies in the context of relevant state laws. Most (80%) school districts sampled did not have policies, (...) regulations, or protocols for dealing with student DNARs. A similar majority (76%) either would not honor student DNARs or were uncertain about whether they could. Frequent contradictions between school policies and state laws also exist. Consequently, children living with life-shortening conditions who have DNARs may not have these orders honored if cardiopulmonary arrest were to occur on school premises. Coordinated efforts are needed to harmonize school district, state, and federal approaches in order to support children and families' right to have important medical decisions honored. (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)

In most, if not all, jurisdictions with active organ transplantation programs, there is a persistent desire to increase donation rates because the demand for transplantable organs exceeds the supply. China, in particular, faces an extraordinary gap between the number of organs donated by deceased donors and the number of people seeking one or more transplants. China might look to Western countries with higher donation rates to determine how best to introduce Western practices into the Chinese system. In attempting to increase (...) its organ donation rate, China must not only ensure that its organ donation system reflects different Chinese cultural values, but also that it avoids the ethical problems of the United States and of other Western systems. This article examines four such problems. They concern the family, obtaining permission for organ donation, the definition and diagnosis of “brain death,” and trust. Revisions to the Chinese system should involve a careful look to China and Chinese cultural resources rather than to Western models. (shrink)

IntroductionIntensive care units are places where technologically advanced and aggressive treatment is the norm. End-of-life decision making for children in pediatric intensive care units is a complex process both medically and ethically. The author examined providers’ decision-making processes that influence both the technique of conversations and the recommendations given to parents regarding limitation or withdrawal of life sustaining treatments.MethodsA qualitative study was conducted in a large PICU. Interview data were analyzed by coding all transcripts and identifying concepts and themes that (...) were then used in the formation of a conceptual framework. This analysis was validated with peer review sessions.ResultsThe author identified four major themes regarding decision-making. They are: Expectations and Perspectives, Communication Enhancers and Inhibitors, Decision Enablers and Barriers, and Conversation Mechanics.DiscussionAdditional research is needed to fully understand the complex decisi... (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

This paper discusses the use of deep brain stimulation for the treatment of neurological and psychiatric disorders in children. At present, deep brain stimulation is used to treat movement disorders in children and a few cases of deep brain stimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deep brain stimulation in children are therefore urgently needed. This paper focuses on the decision-making process, and provides an ethical framework for (future) treatment decisions in pediatric (...) deep brain stimulation. I defend a shared decision-making model in case of deep brain stimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)

The provision of intensive care enables the lives of neonates, infants and children to be sustained or extended in circumstances previously regarded as impossible. However, as well as benefits, such care may confer burdens that resultingly frame continuation of certain interventions as futile, conferring more harm than or any, benefit. Subsequently, clinicians and families in the paediatric intensive care unit are often faced with decisions to withdraw, withhold or limit intensive care in order to act in the best interests of (...) the child. An integral consideration in respect of these decisions is that futility is a concept that has to be contextualised for all those involved. Recent high-profile legal cases highlight the professional, clinical, legal and social conflicts that can arise when parents and clinicians have different interpretations of futility. In acknowledging the complexity of these conflicts for clinicians, this paper aims to support a better understanding of futility as an integral concept in such difficult and emotive decisions within professional practice. We utilise the concept of futility to frame how these decisions to withdraw or withhold certain invasive life-prolonging interventions are ethically and legally justifiable, even when they disagree or conflict with parental views. To support clinicians in understanding these decisions, we in part use the familiar bioethical framework of Principlism developed by Beauchamp and Childress. We suggest that understanding legal and ethical analysis of futility ultimately will help clinicians in approaching and reflecting on such decision-making. (shrink)

This case study focuses on decision-making for minors who are permanently unconscious and dependent on life-sustaining therapies. Cases of this type often cause anguish and angst for health care providers and caregivers and can lead to mistrust, moral distress, and communication problems. After presenting a particular case, an ethical analysis is applied to determine whether there is an apparent course of action or an ethical dilemma. The ethical analysis focuses on the currently accepted guidance principle for surrogate decision-making for minors (...) and applies them to the case. The conclusion drawn shows that the case was not, in fact, an ethical dilemma by definition and that there is a reasonable course of action to be taken. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

The well-being account of sacrifice says that sacrifices are gross losses of well-being. This account is attractive because it explains the relationship between sacrifice and moral obligation. However, sacrifices made on behalf of loved ones may cause trouble for the account. Loving sacrifices occur in a context where the agent’s well-being and the beneficiary’s well-being are intertwined. They present a challenge to individualism about well-being. Drawing inspiration from feminist philosophers and bioethicists, I argue that a notion of ‘relational well-being’, analogous (...) to ‘relational autonomy’, can help account for loving sacrifices without either undermining the well-being theory of sacrifice or minimizing the very real sacrifices made in caregiving situations. (shrink)

We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over minimal risk” and (...) explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.”. (shrink)

The Western focus on personal autonomy as the normative basis for securing persons’ consent to their treatment renders this autonomy-based approach to informed consent vulnerable to the charge that it is based on an overly atomistic understanding of the person. This leads to a puzzle: how does this generally-accepted atomistic understanding of the person fits with the emphasis on familial consent that occurs when family members are provided with the opportunity to veto a prospective donor’s wish to donate after she (...) has died and her organs are being considered for harvesting? It is argued in this paper that this charge can be met and this puzzle dissolved once it is recognized that autonomy is an inherently social concept. (shrink)

Die allogene Transplantation von Blutstammzellen aus dem Körper von Kindern, die der Spende nicht selbst zustimmen können, in den Körper eines kranken Geschwisterkindes wirft schwierige ethische Fragen auf. Wie kann ein risikobehafteter, fremdnütziger medizinischer Eingriff ethisch gerechtfertigt werden? In dieser Arbeit werden Argumente kritisch untersucht, nach denen das Spenderkind eine Pflicht habe, bei der Transplantation mitzumachen. Die Idee der Pflicht ist nachvollziehbar aus der Perspektive der Eltern, die zwar in einem Fürsorgekonflikt sind (ein Kind zu Gunsten der Rettung des anderen (...) verletzen zu müssen), aber selbst eine Pflicht haben, für das Leben des kranken Kindes zu kämpfen. Eine Analyse des Pflichtbegriffs zeigt jedoch, dass die Erfüllung einer Pflicht daran gebunden ist, entscheidungskompetent zu sein. Drei Wege werden untersucht, eine solche Pflicht dennochzuzuschreiben: i) die Eltern übertragenihre Pflicht auf das Kind; ii) die Interessen des Spenderkindes implizieren eine Pflicht; iii) Geschwisterkinder haben aufgrund ihrer vertrauten Familienbeziehungen Pflichten untereinander, die auch die Pflicht zu spenden beinhalten. Alle drei Zuschreibungsstrategien werden als unhaltbar kritisiert. Das Ergebnis lautet, dass die Pflicht, einem Geschwisterkind Körpergewebe zu spenden, einem nicht-einwilligungsfähigen Kind nicht zugeschrieben werden kann. Andere philosophische Ansätze zur Stammzellspende von Kindern an Familienangehörige müssten entwickelt und geprüft werden. (shrink)

In “Acquiescence is Not Agreement,” Caruso Brown (2022) offers a comprehensive framework for identifying and empowering marginalized voices in pediatric decision-making. She does so through both a...

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)

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently there has been a trend (...) to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

This essay reflects on arguments by Paul Ramsey, in The Patient as Person: Explorations in Medical Ethics (1970) and elsewhere, that continue to challenge policy‐makers and those doing clinical and translational research involving children. Ramsey argued that parents cannot morally authorize their child's participation in research unless the research is designed to benefit the child. He acknowledged that abiding by this position could have adverse impacts on improving child health, and he concluded, in a 1976 Hastings Center Report piece, that (...) researchers must “sin bravely.” Many philosophers and theologians, including Richard McCormick, have argued against Ramsey. The Ramsey‐McCormick debate played out in the bioethics literature and, by invitation, at the deliberations of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which was tasked with developing an ethics framework and policies for human subjects protections. Although in its final recommendations, the commission sided with McCormick, the strict limitations on risks and harms to which a child can be exposed were clearly influenced by Ramsey. (shrink)

In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Julian Chisolm and Mark Farfel, of John Hopkins University, had (...) disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies. (shrink)

In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Julian Chisolm and Mark Farfel, of John Hopkins University, had (...) disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies. (shrink)