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)

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child’s medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians’ concerns in practice: What should (...) a clinician do when he or she thinks that parents are choosing a treatment pathway that does not serve the child’s best interests? Alderson’s work, in contrast, focuses on the much broader issue of children’s role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches,... (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)

This paper briefly reviews highlights from decades of debates in medicine, law, bioethics, psychology and social research about children’s and parents’ views and consent to medical treatment and research. There appears to have been a rise and later a fall in respect for children’s views, illustrated among many examples by a recent book on the zone of parental discretion, which is reviewed. A return to greater respect for children’s views and consent is advocated.

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these gaps, by first analysing (...) reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile. (shrink)

The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer (...) class='Hi'>treatment, and the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic. (shrink)

This paper argues that liberal tenats that justify intervention to promote the welfare of an incompetent do not suffice as a basis for analyzing parent-child relationships, and that this inadequacy is the basis for many of the problems that arise when thinking about the state's role in resolving family conflicts, particularly when monitoring parental discretion in medical decision-making on behalf of a child. The state may be limited by the best interest criterion when dealing with children, but parents (...) are not. The state's relation with the child is formal while the parental relation is intimate, having its own goals and purposes. While the liberal canons insist on the incompetent one's best interest, parents are permitted to compromise the child's interests for ends related to these familial goals and purposes. Parents decisions should be supervened, in general, only if it can be shown that no responsible mode of thinking warrants such treatment of a child. Keywords: proxy medical consent, children's rights, state's protection of children, parental authority and the state's intervention, paternalism, liberalism, parental values CiteULike Connotea Del.icio.us What's this? (shrink)

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the (...) specific interventions provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making. (shrink)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance (...) of informed and voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I (...) conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam’s concept of the zone of parental discretion. (shrink)

The welfare of the child is the prevailing principle and concern regarding access to assisted reproduction in Western countries today, and there is a wish to avoid harm to future children. New research fields have developed in order to provide scientific evidence on the welfare of children living with different “types” of parents. Assisted reproductive technologies (ART) seems to be heading in a responsible direction where the care and concern for future children is vital. However, the claim of this article (...) is that the principle of the welfare of the child confuses the ethical framing of ART. Several philosophers in the past have argued that potential people must be regarded as outside the moral domain, and therefore cannot be harmed or benefitted. This message has not reached the policymakers, probably because the welfare of the child principle seems to fit so elegantly with common sense. In this article a different ethical framing of ART is proposed. The author argues that “futile care” and not “the welfare of the child” should be the guiding principle for eventually rejecting access to ART. The desired goal of ART treatment should be understood to be the production of functional families. Assisted reproduction is primarily about us, actual people in an actual society, and how potential children may affect us. (shrink)

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)

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy’s narrative, situated in (...) the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics. (shrink)

Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant’s biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on behalf of an infant, and if so, what are the (...) limits to this decision-making authority? In particular, can they refuse treatment that might be considered best for the infant? We examine different ethical arguments to underpin parental decision-making authority; we argue that provided that minor parents are capable of fulfilling their parental duties, they should have a right to make medical decisions for their infant. We then examine the ethical limits to minor parents’ decision-making authority for their children. We argue that the restricted authority that teenagers are granted to make medical decisions for themselves looks very similar to the restricted autonomy of all parents. That is, they are permitted to make choices, but not harmful choices. Like all parents, minor parents must not abuse or neglect their children and must also promote their welfare. They have a moral right to make medical decisions for their infants within the same ‘zone of parental discretion’ that applies to adult parents. We conclude that adult and minor parents should have comparable decision-making authority for their infants. (shrink)

The article presents a new theory for the subdivision of human thought into four domains that are experientially and operationally discrete and are elaborated by activity in four anatomically definable areas of the dorsolateral prefrontal cortex. I propose that these areas constitute the Social, Material, Temporal anddivisions of the mind and that their sequential maturation accounts for the cognitive stages of childhood. The Social Mind ) is responsible for our emotional intelligence. The Temporal Mind enables us to contemplate the future (...) in terms of a sequence of manageable sub-goals. The Material Mind is responsible for our practicality. The Abstract Mind enables us to comprehend possibility and generate hypotheses. Because recent neurogenetical studies show the powerful influence of genes in controlling the size of the areas of Brodmann, I suggest further that variation in the size of these areas provides an explanation for the genetic basis of personality and many of the so-called cultural differences apparent between long-isolated human populations. (shrink)

This study described parent participation in the informed consent conference for randomized clinical trials (RCTs) in childhood leukemia and documented the relationship of physician communication to parent participation. Parents of 140 children with newly diagnosed leukemia who were eligible for RCTs were studied at six sites using comprehensive methods involving direct observation and transcripts of parent-physician communication based on audiotapes. Parent participation during the informed consent conference reflected a wide range of content categories. Consistent with hypotheses, Physician Rapport and Partnership (...) Building related to parent participation in the informed consent conference but Information Giving did not. Higher parent socioeconomic status also was related to greater parent participation for two of three measures of parent participation. Findings suggest that physician behaviors that provide support and facilitate communication may enhance parental participation in the informed consent conference for RCTs in childhood leukemia. (shrink)

Brain tumors are a common form of solid tumors in children and, unfortunately, they are characterized by a very uncertain prognosis. The treatment of this pathology often includes one or more very invasive surgical procedures, quite often in the very first steps of the treatment. Cases of brain tumors in children represent one of the greatest challenges for health care professionals in the domain of pediatric neurosurgery. This is clearly due to the complexity of the therapeutic plan, (...) but also to the nature of the bond that is established between the child, the parents, and the members of the staff during the often-dramatic initial phase of the illness. In this phenomenological-hermeneutic study, we explore both the emotional and organizational needs, as well as the available professional and personal resources of the staff in the Neurosurgery ward of the Meyer Children’s Hospital in Florence. The ward staff, composed of 7 surgeons, a pediatric neuro-oncologist, 12 nurses, and 4 auxiliary health care professionals, underwent in-depth interviews that were recorded. The recordings were then transcribed and submitted to content analysis according to COREQ standards. A complex picture of emotional as well as organizational demands emerged from the data. Shared experiences were pointed out, together with more specific and idiosyncratic contents characteristic of different professional roles. The focus of the present paper was twofold, first, we considered the needs that are overtly expressed by the staff, and then we discussed the main sources of their motivational drives. We found that the latter is mainly found in the quality of the therapeutic bond that is established with the children and the family members, together with the deep interest in one’s own professional activity and the effective complementarity and integration of the personal and professional qualities of the staff members within the multidisciplinary caring group. (shrink)

Dimensions of character are often overlooked in professional practice at the expense of the development of technical competence and operational efficiency. Drawing on philosophical accounts of virtue ethics and positive psychology, the present work attempts to elevate the role of ‘good’ character in the professional domain. A ‘good’ professional is ideally one that exemplifies dimensions of character informed by sound judgement. A total of 2340 professionals, from five discrete professions, were profiled based on their valuation of qualities pertaining to (...) character and judgement. Profile differences were subsequently examined in the self-reported experience of professional purpose towards a wider societal ‘good’. Analysis of covariance, controlling for stage of career, revealed that professionals valuing character reported higher professional purpose than those overweighting the importance of judgement or valuing neither character nor judgement, F = 7.92, p <.001. No differences were found between the two groups valuing character, irrespective of whether judgement was valued simultaneously. This profiling analysis of entry-level and in-service professionals, based on their holistic character composition, paves the way for fresh philosophical discussion regarding what constitutes a ‘good’ professional and the interplay between character and judgement. The empirical findings may be of substantive value in helping to recognise how the dimensions of character and judgement may impact upon practitioners’ professional purpose. (shrink)

Recent disputes over whether older people should pay more for health insurance, or receive lower priority for transplantable organs, highlight broader disagreements regarding the legality of using age-based criteria in health care. These debates will likely intensify given the changing age structure of the American population and the turmoil surrounding the financing of American health care. This Article provides a comprehensive examination of the legality and normative desirability of age-based criteria. I defend a distributive justice approach to age-based criteria and (...) contrast it with two prevailing theoretical approaches to age-based criteria, nondiscrimination and discretion. I propose a detailed normative framework for the use of age-based criteria in health care, the lifetime justice approach, that considers the future life patients can gain from treatment and the past years of life they already have experienced. -/- This paper is available by open access from the Boston College Law School Digital Commons. (shrink)

BackgroundAll hospital trusts in Norway have clinical ethics committees. Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.MethodsTen next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel (...) who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.ResultsAll next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.ConclusionsNone of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion. (shrink)

Background Against a background of on the one hand, a declining demography and a conservative family register system that emphasizes the importance of the blood line, and on the other hand, an increase in the number of people undergoing fertility treatment, the absence of a legal regulatory framework concerning ART matters is likely to result in an increasing number of contradictory situations. It is against this background that the paper sets out to examine the judgements of court cases related (...) to ART, with a particular focus on the legal determination of parental status, and to link these to aspects of the legal and socio-ethical environment within which the courts make their judgements. Methods The methods used were thorough investigation of all the court cases concerning ART in the public domain in Japan, including the arguments of the concerned parties and the judgements so far delivered. With the court cases as a central focal point, trends in Japan, including deliberations by government and academic societies, are reviewed, and the findings of surveys on the degree of understanding and attitudes among the people toward ART are summarized. Results In terms of the judgements to date, the central criteria used by the courts in determining parental status were the act of parturition and the consent of the husband of the concerned couple. The government and academic societies have displayed a cautious attitude toward ART, but the findings of attitude surveys among the people at large show a generally positive attitude toward ART. Attitudes toward the overwhelming importance hitherto attached to the bloodline are also seen to be changing. Conclusion The main conclusion is that in the absence of a legal regulatory framework for ART, there is likely to be an increase in the contradictions between the use of outdated legal precedents and the technical development of ART. Since much of the specialist discussion necessary for the formulation of a legal framework has already been carried out, the speedy enactment of comprehensive and at the same time flexible legislation would be highly desirable, but further wide-ranging discussion involving the general public is likely to be needed first. (shrink)

Adolescents who believe that their parents treat them differently from their siblings have poorer psychosocial well-being than otherwise. This phenomenon, which is known as parental differential treatment or PDT occurs in up to 65% of families. Past studies have examined socio-demographic variables (e.g., child gender, age, and birth order) as predictors of PDT, but these immutable characteristics do little to inform interventions and help these adolescents. Hence, this study extends past research by investigating links among parent empathy, parent (...) perception of PDT, child perception of PDT, child perception of fairness and child well-being (self-esteem, depression, anxiety, and trust in the relationship with parents). Furthermore, this study tests whether adolescent personality (openness, conscientiousness, extraversion, agreeableness and neuroticism), child empathy, and child perception of fairness moderate these links. This study will utilize a two-wave longitudinal design with a one-year lapse. Data will be collected from 760 Chinese adolescents studying from Secondary One to Secondary Three in 18 schools in Hong Kong and from their parents. We test our theoretical model via a multilevel structural equation model. This study both addresses (a) theoretical debates about relations among empathy, PDT, fairness, and psychosocial well-being and (b) focuses on modifiable factors and behaviors, to inform future interventions, such as parent education. (shrink)

The computational complexity of finding a shortest path in a two-dimensional domain is studied in the Turing machine-based computational model and in the discrete complexity theory. This problem is studied with respect to two formulations of polynomial-time computable two-dimensional domains: domains with polynomialtime computable boundaries, and polynomial-time recognizable domains with polynomial-time computable distance functions. It is proved that the shortest path problem has the polynomial-space upper bound for domains of both type and type ; and it has a polynomial-space (...) lower bound for the domains of type, and has a #P lower bound for the domains of type. (shrink)

This issue of Narrative Inquiry in Bioethics explores the concerns and point of view of parents who have had to confront the devastating diagnosis of a pediatric brain tumor. This commentary, written by a general pediatrician, is a synthesis of several narrative themes which touch on a range of topics from relapse to long-term sequelae and other issues that effect a growing population of pediatric brain tumor patients. It offers a glimpse into the problems that need to be addressed by (...) health professionals, educators and support teams who provide short and long term care to these patients and their families. (shrink)

Few automated legal reasoning systems have been developed in domains of law in which a judicial decision maker has extensive discretion in the exercise of his or her powers. Discretionary domains challenge existing artificial intelligence paradigms because models of judicial reasoning are difficult, if not impossible to specify. We argue that judicial discretion adds to the characterisation of law as open textured in a way which has not been addressed by artificial intelligence and law researchers in depth. We (...) demonstrate that systems for reasoning with this form of open texture can be built by integrating rule sets with neural networks trained with data collected from standard past cases. The obstacles to this approach include difficulties in generating explanations once conclusions have been inferred, difficulties associated with the collection of sufficient data from past cases and difficulties associated with integrating two vastly different paradigms. A knowledge representation scheme based on the structure of arguments proposed by Toulmin has been used to overcome these obstacles. The system, known as Split Up, predicts judicial decisions in property proceedings within family law in Australia. Predictions from the system have been compared to those from a group of lawyers with favourable results. (shrink)

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents’ medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence (...) between intervention principles—or at least an absence of conflict between them—matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making. (shrink)

This study explored the unique effect of fathers’ parenting behaviors and the quality of co-parenting described as the degree of consistency between paternal and maternal parenting behaviors on children’s academic self-efficacy. The power of both pancultural parenting behaviors and specific parenting controlling behaviors that are relatively common in Turkish culture in predicting academic self-efficacy was tested. A total of 1,931 children completed measures of parenting behaviors and academic self-efficacy in math and literature courses in their school. Overall, girls reported higher (...) levels of literature self-efficacy, whereas boys reported higher levels of math self-efficacy. Compared to boys, girls perceived higher levels of positive parenting behaviors from both their fathers and mothers. The results of the regression analyses showed that, whereas father warmth had stronger effects on boys’ math self-efficacy, mother warmth had stronger effects on girls’ literature self-efficacy. Examination of the effects of co-parenting quality demonstrated that children with positively consistent parents reported the highest level of academic self-efficacy, whereas those having negatively consistent parents had the lowest level of academic self-efficacy. Analyses on inconsistent co-parenting, however, yielded compensatory effects, which were similar to positively consistent parents, and deterioration effects, which were similar to negatively consistent parents depending on the gender of parent and child, domain of parenting behavior, and academic efficacy. This study contributed to the current literature by showing the unique role of fathers over and beyond mothers, and confirmed the importance of positive parenting and parenting consistency in promoting children’s academic efficacy. Cultural and practical implications of the findings were discussed. (shrink)

A number of increasingly sophisticated technologies are now being used to support complex decision-making in a range of contexts. This paper reports on work undertaken to provide decision support in the discretionary domain of sentencing by referring to a recently created Toulmin argument based model that involves the interplay and weighting of relevant rule-based and discretionary factors used in a decisional process. Judicial discretion, particularly in the sentencing phase, is one of the mainstays of justice systems that favour (...) individualised justice. The study discusses the modelling process in Victorian courts in Australia, where the handing down of an appropriate custodial or non-custodial sentence requires the consideration of many factors. Tools and techniques used to capture relevant expert knowledge and display it both as a paper model and as an online prototype application are discussed. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the (...) pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Background. Decisions to test, enrol and disclose HIV status are among the ethical challenges that may influence adherence to antiretroviral therapy (ART) and HIV care and treatment in adolescents living with HIV. In the Tanzanian setting, how parental perceptions of ethical issues affect adolescents’ adherence to HIV care and treatment is not well known.Objective. To explore parental perceptions of ethical issues in adolescent HIV care and treatment. Methods. The study employed a descriptive qualitative exploratory design (...) and was conducted at Temeke Regional Referral Hospital in Dar es Salaam Care and Treatment Centre (CTC) in the Outpatient Department (OPD). The study population were parents and non-parent caregivers of HIV-infected adolescents 10 - 19 years of age. A total of 16 persons participated in semi-structured interviews after their consent was obtained. All interviews were audiotaped, transcribed verbatim in Swahili and back-translated into English. An inductive content analysis was used, and standards of qualitative rigour applied. Results. Three qualitative themes emerged: balancing adolescents’ autonomy with parents’ desire to protect their children; parental dilemmas regarding disclosure of adolescents’ HIV status; and parental reasons for delayed disclosure.Conclusion. Participants perceived that parental authority should override adolescents’ autonomy in HIV care and treatment. Disclosure of HIV status to adolescents is a challenge to parents. Delays in disclosure often occur because parents feel guilty and because they have fears of rejection by their adolescent children. (shrink)

Much legal research focuses on understanding how judicial decision-makers exercise their discretion. In this paper we examine the notion of legal or judicial discretion, and weaker and stronger forms of discretion. At all times our goal is to build cognitive models of the exercise of discretion, with a view to building computer software to model and primarily support decision-making. We observe that discretionary decision-making can best be modeled using three independent axes: bounded and unbounded, defined and (...) undefined, and binary and continuous. Examples of legal tasks are given from each of the eight ensuing octants and we conclude by saying what this model shows about current legal trends. We should stress that our taxonomy has been based on our observations of how discretionary legal decisions are made. No claim is made that our model is either complete (providing advice in every domain) or exact, but it does help knowledge engineers construct legal decision support systems in discretionary domains. (shrink)

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? -/- This volume explores all of (...) these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. -/- The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis. (shrink)

_Background:_ Several studies have shown a connection between mothers with postnatal depression (PND) and emotional-behavioral problems in their children. Mothers’ psychopathology may impair interactional patterns with children and these outcomes can be influenced by father’s psychopathological symptoms. The primary aim of the study was to assess over time parent-infant interaction in families where mothers have experienced PND and have received psychological treatment during the child’s first year of life considering the severity of parents’ psychopathological symptoms and children’s temperament. _Methods:_ (...) Three groups of families were involved: families with mothers with PND wherein both parents followed a psychological treatment (TxMF); families with mothers affected by PND wherein only the mother followed the treatment (TxM) and control families wherein the mothers did not have a psychopathological diagnosis and did not receive any treatment (Con). The families were assessed at two time points through Symptom Check-List-90-Revised (SCL-90-R), Questionari Italiani Temperamento (QUIT) and the video-recorded procedure observing mealtime Scala di Valutazione Interazioni Alimentari (SVIA). _Results:_ Parents in the TxMF group had significantly lower SVIA scores (i.e., less maladaptive) at T2. TxMF group scored lower at T2 at SCL-90-R, whereas TxM showed no significant differences between T1 and T2. Involvement of fathers in the treatment was important to improve the psychopathological symptoms of both parents and the quality of interactions with their children. (shrink)

Picture books are an important source of new language, concepts, and lessons for young children. A large body of research has documented the nature of parent-child interactions during shared book reading. A new body of research has begun to investigate the features of picture books that support children's learning and transfer of that information to the real world. In this paper, we discuss how children's symbolic development, analogical reasoning, and reasoning about fantasy may constrain their ability to take away content (...) information from picture books. We then review the nascent body of findings that has focused on the impact of picture book features on children's learning and transfer of words and letters, science concepts, problem solutions, and morals from picture books. In each domain of learning we discuss how children's development may interact with book features to impact their learning. We conclude that children's ability to learn and transfer content from picture books can be disrupted by some book features and research should directly examine the interaction between children's developing abilities and book characteristics on children's learning. (shrink)

The parents of Charlie Gard, who was born August 4, 2016, with an exceedingly rare and incurable disease called mitochondrial DNA depletion syndrome, fought a prolonged and heated legal battle to allow him access to experimental treatment that they hoped would prolong his life and to prevent his doctors from withdrawing life-sustaining care. Charlie's clinicians at the Great Ormond Street Hospital in London believed that the brain damage Charlie had suffered as a result of frequent epileptic seizures, along with (...) many other severe disabilities, would render any innovative therapy futile, and they disagreed with his parents’ wishes to use an experimental therapy. They felt it in Charlie's best interest that he be allowed to die. A battle ensued among Charlie's parents, his doctors, and a guardian who had been appointed to represent him that drew the attention of politicians and prominent persons from all over the world. The case was much in the news over the past year, but it has also been frequently misunderstood. (shrink)

This paper outlines the full details of Lucretius’ treatment of parental love. It shows that Lucretius is faithful to Epicurus’ notorious claim that parental love is not natural: in addition to orthodox Epicurean hedonist concerns, Lucretius asserts that children do not “belong to” their parents by nature; as such, even though parental love is now ubiquitous and indeed a cultural norm, there is no basis for the naturalness of parental love. This model of the relationship (...) between parents and children does not, however, apply in the case of certain animals, who do have natural parental love for their offspring. Focusing on two famous scenes, the sacrifice of Iphigenia and the forlorn heifer seeking her sacrificed calf, the paper argues that by highlighting the fragility of human parental love in comparison to that of the animals Lucretius brings to his Roman readers’ attention the relative weakness of the familial ties that bond human beings together, and at the same time he emphasizes the need to maintain them if social and political concord, with all its benefits, is to continue. It transpires that unlocking the details of Lucretius’ treatment of parental love brings a key lesson of the poem into clearer focus. (shrink)

Medical, scientific and societal progress has been such that, in a universalist humanist perspective such as the WHO’s, it has become an ethical imperative for the primary endpoints in evidence based health care research to be expressed in e.g. Quality Adjusted Life Years (QALYs). The classical endpoints of discrete health‐related functions and duration of survival are increasingly perceived as unacceptably reductionistic. The major problem in ‘felicitometrics’ is the measurement of the ‘quality’ term in QALYs. That the mental, physical and social (...) domains, each containing many dimensions and items, all contribute to QOL is uncontroversial. What is controversial, is the weight of the different dimensions in overall QOL. It has been shown to be very different between different patient populations. In human individuals, assuredly complex systems, the many dimensions and items of QOL observably interact, probably sometimes also in chaotic ways. In these conditions, the weights of isolated items in individuals become for all practical purposes meaningless. Therefore, the much used multi‐item questionnaires at best describe, but do not evaluate QOL, neither in individuals, nor in populations. For example, allergic patients treated with cetirizine scored better than those a placebo on all dimensions of the SF‐36, a standard QOL questionnaire. Here there is no serious doubt that the treatment improved QOL, because it is highly unlikely that any important dimension on which the patient groups would have scored otherwise is missing in the SF‐36. However, whether piracetam treatment of acute stroke, which improved the surrogate endpoints neurological and functional scores, also improved QOL is plausible, but will be proven only when comprehensive QOL measurement will have been done. And suppose in randomised populations of end‐stage metastatic solid cancer patients, one would compare palliative last‐line chemotherapy with only palliative care, and one would, as can be expected, find no significant differences in average survival, and chemotherapy superior for the mental domain, but inferior for the physical comfort domain: we would not know which treatment, on aggregate, would be the better. The problem is that QOL is an individual and emergent construct, the resultant of a great many intractions, and of a different order than its contributing components. Overall QOL can therefore best be captured only as the Gestalt of a global self‐assessment. Just as people in everyday life, while acting under uncertainty, make global assessments all the time, so they can seriously answer the serious question: ‘How have you been?’ A solemn, practical, non peer‐relativistic, non‐cultural, experiential, and well tolerated way to obtain such responses is Anamnestic Comparative Self Assessment (ACSA), in which the subjects' memories of the best and the worst times in their life experience define their individual scale of QOL. ACSA is thus both exquisitely idiosyncratic, and yet can in a universalist humanistic perspective be considered generic. Using both a multi‐item questionnaire and a global assessment allows by one logistic regression, to estimate the weights of the dimensions and items in populations, and thus identify those whose improvement would most contribute to the QOL of the greatest number. A combined approach to measurement of QOL is necessary to maximise the utility of QOL interventions. (shrink)

We describe on-going work on IAO-Intel, an information artifact ontology developed as part of a suite of ontologies designed to support the needs of the US Army intelligence community within the framework of the Distributed Common Ground System (DCGS-A). IAO-Intel provides a controlled, structured vocabulary for the consistent formulation of metadata about documents, images, emails and other carriers of information. It will provide a resource for uniform explication of the terms used in multiple existing military dictionaries, thesauri and metadata registries, (...) thereby enhancing the degree to which the content formulated with their aid will be available to computational reasoning. (shrink)

A key issue in the philosophy of biology is evolutionary contingency, the degree to which evolutionary outcomes could have been different. Contingency is typically contrasted with evolutionary convergence, where different evolutionary pathways result in the same or similar outcomes. Convergences are given as evidence against the hypothesis that evolutionary outcomes are highly contingent. But the best available treatments of contingency do not, when read closely, produce the desired contrast with convergence. Rather, they produce a picture in which any degree of (...) contingency is compatible with any degree of convergence. This is because convergence is the repeated production of a given outcome from different starting points, and contingency has been defined without reference to the size of the space of possible outcomes. In small spaces of possibilities, the production of repeated outcomes is almost assured. This paper presents a definition of contingency which includes this modal dimension in a way that does not reduce it to the binary notion of contingency found in standard modal logic. The result is a conception of contingency which properly contrasts with convergence, given some domain of possibilities and a measure defined over it. We should therefore not ask whether evolution is contingent or convergent simpliciter, but rather about the degree to which it is contingent or convergent in various domains, as measured in various ways. (shrink)

This is the first description of the questions that clinicians ask a department of clinical law, relating to the legal rules applicable to the care of their patients.ObjectivesTo describe in detail the demography of clinical legal enquiries made by clinicians of all professions concerning the care of their patients. To collate and categorise the varieties of enquiry, to identify phenotypic patterns. To provide colleges, regulators, commissioners, educators and the NHS with an insight into hitherto undescribed subject matter, better to understand (...) and respond to this aspect of clinical practice.DesignProspective collection of all clinical legal referrals recorded in writing over 12 years by a department of clinical law.SettingAn English Tertiary Hospital NHS Trust.ParticipantsClinical staff of the regulated professions, all seeking to have their clinical legal enquiries answered.Main outcome measuresThe description of the demography of clinical law.Results1251 written records were identified and reviewed. These were divided into nine broad clinical legal subject areas (domains): mental disorders, parents and children, incapacity, consent for treatment, disclosure of private information, other statutory, regulated practice, professional practice, clinical practice. Within these, 149 clinical legal phenotypes were identified to which each case could be assigned.ConclusionsAmong a broad range of enquiries, recognisable clinical legal phenotypes exist and have for the first time been described and categorised. These are clinical situations which clinicians need to be able to recognise and equipped to deal with. Doing so will likely facilitate timely and better treatment. (shrink)

Some children may face some developmental problems in one ormore areas of their developmental milestones. One of them is speech delay. Todate, a screening tool for speech delay early detection among children is stilllacking, especially in Malaysia. Parents do not know where to refer and whichorganisation can help them especially for first-time parents. The objective ofthis paper is twofold. First, this paper analyses existing screening system orapplication for speech delay in children. Second, this paper proposes a mobileapplication designed for Malaysian (...) parents to help them detect speech delayin their children. A qualitative expert review was used to design and build theapplication. The screening application proposed is for early detection and tourge parents to seek for early intervention through appropriate assessments. Inconclusion, early detection in speech delay is critically important to increasethe chances for improving speech and communication skills. Thus, a speechdelay screening tool is needed for parents to seek proper treatment for theirchildren. (shrink)

An important lesson that philosophy can learn from the Turing Test and computer science more generally concerns the careful use of the method of Levels of Abstraction (LoA). In this paper, the method is first briefly summarised. The constituents of the method are “observables”, collected together and moderated by predicates restraining their “behaviour”. The resulting collection of sets of observables is called a “gradient of abstractions” and it formalises the minimum consistency conditions that the chosen abstractions must satisfy. Two useful (...) kinds of gradient of abstraction – disjoint and nested – are identified. It is then argued that in any discrete (as distinct from analogue) domain of discourse, a complex phenomenon may be explicated in terms of simple approximations organised together in a gradient of abstractions. Thus, the method replaces, for discrete disciplines, the differential and integral calculus, which form the basis for understanding the complex analogue phenomena of science and engineering. The result formalises an approach that is rather common in computer science but has hitherto found little application in philosophy. So the philosophical value of the method is demonstrated by showing how making the LoA of discourse explicit can be fruitful for phenomenological and conceptual analysis. To this end, the method is applied to the Turing Test, the concept of agenthood, the definition of emergence, the notion of artificial life, quantum observation and decidable observation. It is hoped that this treatment will promote the use of the method in certain areas of the humanities and especially in philosophy. (shrink)

The question of the moral acceptability of infertility treatment to HIV positive persons raises a number of interesting ethical points regarding the responsibility of the infertility specialist for the outcome of his or her actions. The analysis of the physician’s responsibility is conducted within the framework of accomplice liability. The physician is a collaborator in the parental project of the principals—that is, the intentional parents. Both causal contribution and intention are considered as elements of complicity. It is concluded (...) that a two per cent risk of vertical transmission when the woman is HIV positive is insufficient to blame the infertility specialist who helps her to conceive. Helping an infertile HIV positive infertile couple to have a child does not constitute reckless behaviour. When the couple is fertile, infertility treatment is directed at risk reduction and falls under the physician’s obligation to act in the best interests of his patients. (shrink)

Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: (...) psychological, behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)

Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision making are the harm principle, the principle of best interest, and the threshold view. This paper consider how these principles apply to a case of a premature neonate with multiple significant comorbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles (...) help to understand what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case, but that the case reveals common bioethical principles for medical decision making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism. (shrink)

This thesis, which is based on six peer-reviewed publications, is a theoretical and qualitative treatment of the ways in which social and contextual factors serve as a resource for understanding the particularities of ‘cybercrime’ that emanates from Nigeria. The thesis illuminates how closer attention to Nigerian society aids the understanding of Nigerian cybercriminals (known as Yahoo Boys), their actions and what constitutes ‘cybercrime’ in a Nigerian context. ‘Cybercrime’ is used in everyday parlance as a simple acronym for all forms (...) of crimes on the internet, whereas ‘cybercrime’ in a Nigerian context is rooted in socioeconomics and determined by it. In particular, the defrauding of victims for monetary benefit is the most significant theme that emerged from the analysis of Yahoo Boys. While all six publications are situated at the intersections of multiple fields of study, they all share a common endorsement of the constructionist/interpretivist position. The six published works comprise: [a] three conceptual publications; and [b] three empirical publications. The conceptual publications deconstruct the meanings of multiple taken-for-granted concepts in cybercrime scholarship and develop more robust conceptual lenses, namely: (1) ‘Digital Spiritualization’; (2) ‘The Tripartite Cybercrime Framework – TCF’; and (3) ‘The Synergy between Feminist Criminology and the TCF’. These new conceptual lenses represent the candidate’s contribution to developing theory in the field. Alongside this, the empirical section includes three sets of qualitative data, which include: (1) interviews with seventeen Nigerian parents; (2) lyrics from eighteen Nigerian musicians; and (3) interviews with forty Nigerian law enforcement officers. These diverse sources of qualitative data provide a more fully-developed understanding of ‘cybercrime’ in the Nigerian context (and elsewhere). All six-published works, while individually contributing to knowledge, collectively shed clearer light on the centrality of cultural context in the explanation of ‘cybercrime’. (shrink)

We propose a discrete time branching process to model the appearance of drug resistance under treatment. Under our assumptions at every discrete time a pathogen may die with probability 1−p or divide in two with probability p. Each newborn pathogen is drug resistant with probability μ. We start with N drug sensitive pathogens and with no drug resistant pathogens. We declare the treatment successful if all pathogens are eradicated before drug resistance appears. The model predicts that success is (...) possible only if p<1/2. Even in this case the probability of success decreases exponentially with the parameter m=μN. In particular, even with a very potent drug (i.e. p very small) drug resistance is likely if m is large. (shrink)