When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (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)

The morality of abortion is a longstanding controversy. One may wonder whether it’s even possible to make significant progress on an issue over which so much ink has already been split and there is such polarizing disagreement (Boyle 1994). The papers in this issue show that this progress is possible—there is more to be said about abortion and other crucial beginning-of-life issues. They do so largely by applying contemporary philosophical tools to moral questions involving life’s beginning. The first two papers (...) defend the pro-life view from recent objections involving miscarriage and abortion doctors. The third shows how the social model of disability and the concept of transformative experience applies to classic debates like abortion and euthanasia. The final two papers address how rights and harms apply to children and to beings that do not yet exist. All five papers make a noteworthy contribution to the moral issues that arise at the beginning of life. (shrink)

Lower respiratory tract infections are a leading cause of paediatric morbidity and mortality worldwide. Children in low-income countries are disproportionately affected. This is in large part due to limitations in healthcare resources and medical technologies. Mechanical ventilation can be a life-saving therapy for many children with acute respiratory failure. The scarcity of functioning ventilators in low-income countries results in countless preventable deaths. Some hospitals have attempted to adapt to this scarcity by using hand-bag ventilation, as either a bridge to a (...) mechanical ventilator, or until clinical improvement occurs rendering mechanical ventilation no longer necessary. In instances of hand-bag ventilation, an endotracheal tube is first placed. Family members are then asked to play the role of a ventilator, manually compressing a bag repeatedly to inflate the child’s lungs. This approach is fraught with numerous ethical challenges. A careful examination of the data and a nuanced approach to the ethical considerations are imperative. Ethical arguments in support of and in opposition to allowing parental hand-bag ventilation are explored, including the best interests of the child, the child’s right to an open future, beneficence and parental protection, legitimising substandard care, and finally, contextual concerns. An algorithmic, potentially ethically permissible approach to parental participation in manual ventilation is proposed. (shrink)

For trans youth, the experience of gender differs from expectations based on sex assigned at birth (Frohard-Dourlent, Dobson, Clark, Duoll, & Saewyc, 2016). To support gender health—the ability to...

According to various accounts, intervention in pediatric decisions is justified either by the best interests standard or by the harm principle. While these principles have various nuances that distinguish them from each other, they are similar in the sense that both focus primarily on the features of parental decisions that justify intervention, rather than on the competency or authority of the parties that intervene. Accounts of these principles effectively suggest that intervention in pediatric decision making is warranted for both physicians (...) and the state under precisely the same circumstances. This essay argues that there are substantial differences in the competencies and authorities of physicians and the state, and that the principles that guide their interventions should also be conceived differently. While both the best interests standard and the harm principle effectively incorporate important aspects of physicians’ ethical obligations, neither adequately reflects the state’s ethical obligations. In contrast to physicians, the state has major obligations of distributive justice and neutrality that should form an integral part of any proposed ethical principles guiding state intervention in pediatric decision making. The differences are illustrated by examining recent cases involving parental refusal of chemotherapy in aboriginal Canadian communities and parental refusal of blood transfusions by Jehovah’s Witnesses. (shrink)

In this article, I will explore the ethical concerns arising out of the use of preimplantation tissue typing to create saviour siblings. There are two main ethical concerns about the welfare of the child to be born as a result of PTT. The first is whether the child to be born is treated as a commodity, as simply a means to save the life of his or her sibling. The second is whether the child to be born will be harmed (...) as a result of PTT, either physically, psychologically or socially. These two ethical concerns reflect an individualistic approach to the welfare of the child, whose interests are treated as largely separate to the interests of other family members. I will argue that the welfare of the child born as a result of PTT should be conceived more broadly to include not only the child’s individual interests, but also the collective interests the child shares with his or her family. I base this broader conception of welfare on the notion of human flourishing, which recognises that the welfare of a child is inextricably connected to the welfare of the intimate collective that is his or her family. The collective interests of intimate family members are particularly relevant in the context of PTT, as the members are engaged in a shared journey to save the life of an ill child. (shrink)

BackgroundThe complexity of decision-making in the paediatric context is well recognised. In the majority of cases, parents and healthcare professionals work together to decide which treatments the paediatric patient should receive. On occasions, however, parental wishes conflict with what clinicians think is best for the paediatric patient. Where persistent disagreement between clinicians and parents exists, clinicians must ascertain if they have a moral, professional, and legal obligation to overrule the parents' decision and implement their preferred option.PurposeFew decision-making frameworks to assist (...) in addressing the ethical issues that arise in clinical decision-making relate specifically to the paediatric context. Diekema's Harm Threshold Framework and the Zone of Parental Discretion Framework assist in determining whether parental decisions should or should not be overridden. This paper examines the similarities and differences between these frameworks.MethodsThe frameworks are analysed i... (shrink)

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human Subjects of Biomedical (...) and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not adequate morally to justify (...) the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection. (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)

United Stated federal regulations allow participation of children in greater than minimal risk research with no potential for direct benefit under narrowly defined circumstances. This type of research is controversial, as it runs contrary to the best interest standard, on which we base most decisions made on behalf of children. I argue that such research is ethically defensible if a fully informed, scrupulous, and virtuous parent would choose to enroll his or her child in the study. Further, I defend the (...) current regulations, which allow local Institutional Review Boards to approve more than minimal risk, nontherapeutic research when the research involves children with the medical condition being studied, but requires federal review for similarly risky studies that involve healthy children. Because families of children with medical diseases tend to be more familiar with the health care system and with medical procedures, they are more able to make informed decisions about the burdens of research participation. Further, parents of children with medical conditions have a morally significant interest in advancing medical knowledge about their child's condition. It is appropriate to take this interest into account when evaluating the ethical status of a research study. (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)

The topic of consent in paediatrics is made more difficult, and at the same time more interesting, by the complexity of the issues involved and the consequent diversity of viewpoints. In a teaching session for senior medical students on consent in paediatrics it proved necessary to reinstate previous learning from a range of disciplines. Philosophical medical ethics, developmental psychology, communication skills and the appropriate legal definitions all contributed to a proper understanding of the cases presented. The two most important additional (...) components appeared to be a) a basic knowledge of cognitive development and how to apply it, and b) an awareness of the need to balance an individual child's rights or best interests, with those of the family unit, as well as the wider society. (shrink)

Section 47 of the 1948 National Assistance Act allows incompetent people, usually old people, to be removed from their homes. It can be considered as a repressive tool, designed to infringe personal liberty, but in this article it is argued that it can also be considered as being legislation which governs and controls professional practice and protects the old person from public prejudice.

More than 24,000 patients await organ transplants and the number is increasing yearly. Living donors are an important source of transplant organs. In this paper, I argue that we can morally justify allowing children to serve as donors. Yet, I also argue that their participation must be restricted in order to prevent their exploitation.The paper is divided into six sections. In the first section, I show why the traditional principles of personal autonomy and beneficence are not adequate morally to justify (...) the participation of children in the nontherapeutic role of organ donor. Next, I argue that the moral justification of the child’s participation must be based on the intimate family relationship which permits activities that would be unacceptable in the public domain. In the third section, I argue that family autonomy ought to be limited by the principle of respect for persons. In the fourth section, I propose five principles to guide the participation of children as organ donors. In section five, I discuss the role of the child in the decision-making process. In section six, I critically examine the criteria for equity in donor selection. (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)