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)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

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 The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits.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 On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being.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)

Modern parents, particularly in countries with highly developed public health systems, are not short of guidance about how to feed their children.1 Advice flows freely from many sources. State organs, particularly health departments and health care providers, offer advice with a reassuringly official provenance. Nutritional and pediatric societies, health-related charities, childcare manuals, parenting websites, and nutrition publications draw on scientific research in formulating their advice. Newspapers and magazines report the findings of the latest nutrition studies. Advice is also relayed informally (...) and personally, often with glosses drawn from personal experience.. (shrink)

In Roper v. Simmons (2005) the United States Supreme Court announced a paradigm shift in jurisprudence. Drawing specifically on mounting scientific evidence that adolescents are qualitatively different from adults in their decision-making capacities, the Supreme Court recognized that adolescents are not adults in all but age. The Court concluded that the overwhelming weight of the psychological and neurophysiological data regarding brain maturation supports the conclusion that adolescents are qualitatively different types of agents than adult persons. The Supreme Court further solidified (...) its position regarding adolescents as less than fully mature and responsible decisionmakers in Graham v. Florida (2010) and Miller v. Alabama (2012). In each case, the Court concluded that the scientific evidence does not support the conclusion that children under 18 years of age possess adult capacities for personal agency, rationality, and mature choice. This study explores the implications of the Supreme Court decisions in Roper v. Simmons, Graham v. Florida, and Miller v. Alabama for the “mature minor” standard for medical decision making. It argues that the Supreme Court’s holdings in Roper, Graham, and Miller require no less than a radical reassessment of how healthcare institutions, courts of law, and public policy are obliged to regard minors as medical decisionmakers. The “mature minor” standard for medical decision making must be abandoned. (shrink)

Biomedical research involving human subjects is an arena of conflicts of interests. One of the most important conflicts is between interests of participants and interests of future patients. Legal regulations and ethical guidelines are instruments designed to help find a fair balance between risks and burdens taken by research subjects and development of knowledge and new treatment. There is an universally accepted ethical principle, which states that it is not ethically allowed to sacrifice individual interests for the sake of society (...) and science. This is the principle of precedence of individual. But there is a problem with how to interpret the principle of precedence of individual in the context of research without prospect of future benefit involving children. There are proposals trying to reconcile non-beneficial research involving children with the concept of the best interests. We assert that this reconciliation is flawed and propose an interpretation of the principle of precedence of individual as follows: not all, but only the most important interests of participants, must be guaranteed; this principle should be interpreted as the secure participant standard. In consequence, the issue of permissible risk ceiling becomes ethically crucial in research with incompetent subjects. (shrink)

This article considers how legislators should respond to evidence that identifies a common and widely accepted parental practice as a potential source of harm to children, using domestic exposure to environmental tobacco smoke as a test case. It is claimed that children are parties to the Harm Principle, and that the State has an obligation to protect children from exposure to harm. Parental prerogative is limited by the need to avoid harming children. That said, there is considerable uncertainty about what (...) is harmful to children. Several sources of uncertainty, both empirical and conceptual, are explored, in order to demonstrate the complexity of the task legislators face. Seven considerations that are relevant to decisions about legislation of harmful parental practices are outlined, and these considerations are then employed to assess the case in favour of legislating to prohibit the exposure of children to environmental tobacco smoke in domestic settings. (shrink)

Abstract:The “Ashley treatment” has provoked much debate and remains ethically controversial. Given that more children are being referred for such treatment, there remains a need to provide advice to clinicians and ethics committees regarding how to respond to such requests. This article contends that there is one particularly important gap in the existing literature about growth attenuation therapy (GAT) (one aspect of the Ashley treatment): the views of parents of children with profound cognitive impairment (PCI) remain significantly underrepresented. The article (...) attempts to redress this balance by analyzing published accounts both from parents of children who have received GAT and from parents who oppose treatment. Using these accounts, important points are illuminated regarding how parents characterize benefits and harms, and their responsibilities as surrogate decisionmakers. This analysis could contribute to decisionmaking about future requests for GAT and might also have wider relevance to healthcare decisionmaking for children with PCI. (shrink)

This paper challenges the foundational claim that the human family is no more than a social construction. It advances the position that the family is a central category of experience, being, and knowledge. Throughout, the analysis argues for the centrality of the family for human flourishing and, consequently, for the importance of sustaining family-oriented practices within social policy, such as more family-oriented approaches to consent to medical treatment. Where individually oriented approaches to medical decision-making accent an ethos of isolated personal (...) autonomy family-oriented approaches acknowledge the central social and moral reality of the family. I argue that the family ought to be appreciated as more than a mere network of personal relations and individual undertakings; the family possesses a being that is social and moral such that it realizes a particular structure of human good and sustains the necessary conditions for core areas of human flourishing. Moreover, since the family exists as a nexus of face-to-face relationships, the consent of persons, including adults, to be members of a particular family, subject to its own respective account of family sovereignty, is significantly more amply demonstrated than the consent of citizens to be under the authority of a particular state. As a result, in the face of a general Western bioethical affirmation of the autonomy of individuals, as if adults and children were morally and socially isolated agents, this paper argues that social space must nevertheless be made for families to choose on behalf of their own members. (shrink)

Prader-Willi syndrome (PWS) is one of the 25 syndromic forms of obesity, in which patients present—in addition to different degrees of obesity—intellectual disability, endocrine disturbs, hyperphagia and/or other signs of hypothalamic dysfunction. In front of a severe/extreme obesity and the failure of non-invasive treatments, bariatric surgery is proposed as a therapeutic option. The complexity of the clinical condition, which could affect the long-term effects of bariatric surgery, and the frequent association with a mild to severe intellectual disability raise some ethical (...) concerns in the treatment of obese PWS adolescents. This article analyses these issues referring to the principles of healthcare ethics: beneficence/non-maleficence (proportionality of treatments; minimisation of risks); respect of autonomy; justice. Based on these principles, three hypothetical scenarios are defined: (1) obese PWS adolescent, capable of making an autonomous decision; (2) obese PWS adolescent with a severe intellectual disability, whose parents agree with bariatric surgery; (3) obese PWS adolescent with a life-threatening condition and a severe intellectual disability, whose parents do not agree with bariatric surgery. The currently available evidence on efficacy and safety of bariatric surgery in PWS adolescents with extreme or severe obesity and the lack of adequate long-term follow-up suggests great caution even in a very life-threatening condition. Clinicians must always obtain a full IQ assessment of patients by psychologists. A multidisciplinary team is needed to analyse the clinical, psychological, social and ethical aspects and organise support for patient and parents, involving also the hospital ethical committee or, if necessary, legal authorities. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent (...) that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

Informed consent processes are a vital component of both human and veterinary medicine. Current practice encourages veterinarians to learn from insights in the human medical field about how best to achieve valid consent. However, drawing on published literature in veterinary and medical ethics, this paper identifies considerable differences between the purposes of veterinary and human medical consent. Crucially, it is argued that the legal status of animal patients as ‘property’ has implications for the ethical role of veterinary informed consent and (...) the protection of the animal ‘patient’. It is suggested that veterinary informed consent should be viewed as an ethical pivot point where the multiple responsibilities of a veterinary professional converge. In practice, balancing these responsibilities creates considerable ethical challenges. As an example, the paper discusses the renewed call for UK veterinarians to make animal welfare their first priority; we predict that this imperative may increasingly cause veterinary informed consent to become an ethical pressure point due to tensions caused by the often conflicting interests of animals, owners and the veterinary profession. In conclusion, the paper argues that whilst gaining informed consent can often be presented as a robust ethical justification in human medicine, the same cannot be said in veterinary medicine. If the veterinary profession wish to prioritise animal welfare, there is an urgent need to re-evaluate the nature of authority gained through owner informed consent and to consider whether animal patients might need to be better protected outside the consent process in certain circumstances. (shrink)