Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a child9s interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with (...) acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Family, Friends, and Cancer:The Overwhelming Effects of Brain Cancer on a Child’s LifeLynne ScheumannOur son was diagnosed with a medulloblastoma at the old age of 13. The “lucky” part for him was his brain was almost fully developed at this age as opposed to most “medullo” patients. While this was a benefit to him it was also one of the hardest things for him.He went into surgery a (...) highly intelligent, active, and left handed boy and came out unable to move his left side, could barely speak, and very much aware of what he just lost. We, as a family, were totally unprepared for how globally this would [End Page 23] affect the rest of his life. As we spent time in the hospital I would look at the children with other types of cancer and see them walking and talking and doing their schoolwork and God forgive me I would be jealous. The fact that the cancer was in his brain, the part of his body that makes him who he is changed everything forever.He lost all of his friends because 13–year–old boys communicate best through physical activity and that was not an option for him. He still has the same personality and sense of humor, but he will not be the architect or engineer he once dreamed of being. Math, that was once so easy for him was now like a foreign language, never to be mastered again. He was able to graduate from High School and takes classes at our local Junior College in Computer Assisted Drafting, but he can only manage one or two classes a semester due to the fatigue he still suffers from.What I most worry about and wish I had been forewarned about is his long–term quality of life. Physically he has come such a long way from how he was after the resection. It was a very slow process in which the first year of rehab was slowed by the fact that one of the chemo agents causes peripheral neuropathy. He developed contractures in his ankles and needed serial casting and ankle–foot orthotics (AFO) not just on the left leg, but now the right. He was able to switch his handedness fairly easily and his left hand will always be of limited usefulness because of ataxia. I would get angry at him that he gave up on his left side so quickly until it was finally explained to me years later that the ataxia would never get better.As far as his walking ability goes he has come a long way. At first he was unable to walk and once he started rehab he went back to learning to crawl and progressed to a walker. The first time I saw him walk with the walker brought tears to my eyes. It was so much more of an event for me than when he took his first steps as a toddler. This was so much more hard fought. He never complained, just always did what was asked of him. It had to have been such hard work and also somewhat embarrassing, as he needed help to literally do everything for months. He progressed to a cane and about two years ago decided not to use that or his AFO’s. He now wears high top boots that substitute for the AFO’s but don’t make him appear disabled. Recently he decided there are times when he would be safer if he had his cane and purchased one that looks more like a hiking stick than a cane. I think he has come to terms with the fact that physically he is as good as he is going to get and works hard to maintain what he did regain. He has a trainer and goes to the gym on a regular basis with no prompting from us. I do not know if he realizes that as he ages things will be harder for him than the average person. I think in some way he is aware of that because he did decided to use the cane if safety is an issue.His... (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)

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)

This book is written primarily for psychology and education students whose programs include a course in child psychology, child development, or theories of development. The text may also be used to supplement courses on child development organized thematically or chronologically. Instructors of graduate courses in child development may wish to consider this text as a primary synthesis containing more source material and source citations than others of its kind. The primary aim of the book is (...) to describe what developmental theories are, what they can do, where they come from, how they work, and how they can be used to explain human nature. (shrink)

Dr de Zulueta articulates some important and commonly held concerns about the anonymised screening programme for HIV in pregnant women, which is one of a number of such programmes that are current. However, in my view, many of these concerns reflect a failure to understand two key distinctions.In both these regards, there is a danger of putting up a “straw man” for challenge. In this commentary, I wish to pick up some of these issues to help to resolve the (...) apparent ethical tensions that Dr de Zulueta has set out.Firstly, the unlinked seroprevalence surveillance programmes, including that on pregnant women, comprise research studies that are designed to inform policy and practice, as well as individual decision making. They are not screening for the purpose of clinical care. The anonymisation is a procedural research tool, which enables the studies to be done in a way that does not undermine consent or individual autonomy. The ethical standards and duties expected of professionals are thus, in this specific regard, those that relate to the conduct of clinical research. That research is evidently designed to improve the quality of clinical care as a result of the information and insight gained. The duty of care is to apply the results of properly conducted and valid research in order to improve clinical practice on behalf of the individuals receiving care, in this case the mother and unborn child. The research conducted, in this case by a particular form of screening procedure, is not the same as a screening procedure done for clinical purposes to identify individuals who could benefit from an intervention. The ethical debate must therefore focus on the purpose in applying the procedure, not on the procedure itself, regardless of intent.Secondly, it is vital to distinguish, in debating such …. (shrink)

Introduction This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia (...) became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged “mental age” and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Could Understanding Harm?Iskra Fileva, PhD (bio) and Linda A.W. Brakel, MD (bio)We would like to thank the editors for organizing this symposium and our commentators—Marga Reimer and James Phillips—for the thought-provoking feedback. Although we had thought about the ideas we discuss from many different angles, our commentators raised several interesting issues we had not considered. We are grateful for the opportunity to continue the conversation.Reply to ReimerAs Professor Reimer (...) notes, we advocate an approach to self-constitution that we dub “understanding first.” On this approach, non-moral and non-normative understanding of the origin of maladaptive traits must precede moral evaluation and attempts to free oneself—or as we say “prune”—undesirable traits. Professor Reimer presents several interesting cases meant both to extend and test the limits of our proposal. We appreciate this approach and respond to each case in turn.Genes and AlcoholismSuppose Alejandro, an adult raised by adoptive parents, struggles with alcohol addiction. He learns that his biological parents died of alcoholic liver disease and comes to believe that his alcohol problem is caused by a genetic propensity toward alcohol abuse. One can ask: “Does an understanding first approach have the potential to undermine the sense of agency that is necessary for the effective treatment of maladaptive traits?”Answer: It can be explained to Alejandro that genetic proclivities are just that—proclivities—that can be overridden. In fact, behavior can alter our very genes—although not at the sequence level— changes known as “epigenetic.” And the liver disease of the biological parents can serve as a cautionary tale. If even in light of these considerations, Alejandro’s tendency to see genetic propensities as deterministic persists, it is worth asking why. There is no evidence that “genes are destiny,” so the disposition to see them that way must have a psychological explanation. What is the explanation? A self-destructive desire? Fear of freedom? This exploration can itself be empowering. [End Page 211]Adaptive ForgettingSuppose Beata, who has an eating disorder, was molested by her own father when she was a child. Subsequently, her father shot himself and now she has no recollection of the molestation. However, Beata’s eating disorder is largely a result of those experiences. It is quite possible that if Beata were to recall being molested, that would do more harm than good. In this connection, one can ask together with Reimer: “Does an understanding first approach have the potential to undermine an adaptive ‘forgetting’ of root causes of maladaptive traits?”Answer: Here, understanding the history, instead of forgetting it, might allow Beata to gain insight into and empathize with possible motives that may have led to becoming obese. For example, she might have the phantasy that if she had been obese and unattractive, she could have prevented the molestation—hence, become that way now to prevent it from happening again, and more wishfully reverse it. (In unconscious goings-on time is thought to be in the “unexamined present” (Brakel 2009, p. 63; 2015, p. 131; 2022, p. 4; 2023, p. 404.) One benefit of this is that in gaining this type of recognition, Beata might find it easier to change her behavior that she otherwise would not have; it was never her responsibility to prevent her own molestation, and there is no reason whatsoever for her to now make herself unattractive to her deceased father, and very little reason to remain obese in an attempt to deter current day men.Ego-Syntonic Maladaptive TraitsClaire is a concert pianist and alcoholic. Importantly, Claire does not see her own desire for alcohol as destructive but rather, as something constitutive of her own identity. “I wouldn’t be myself without alcohol,” she says. Reimer asks whether our approach would “work for cases where the agent sees a maladaptive trait as constitutive of their identity?”Answer: Although no approach can guarantee success, our claim is that our approach has a better chance than the main alternative known as the pruning view. Since Claire, by stipulation, is not inclined to see her own drinking as a problem, a... (shrink)

In their paper Hortonet alargue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Hortonet al’s position that (...) it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Hortonet al’s concerns but would not involve over-riding any previously expressed wishes. (shrink)

The phenomenon of femicide is a social tragedy, keeping on being perpetrated across time. Its consequences are deeply traumatic for children and adolescents, becoming motherless, by their father or by their agent of fatherly care. It represents a serious trauma, still needing to be adequately addressed, by the different human sciences and, especially, involving pedagogy in a careful reflection, in order to facilitate full development processes for a subject in a childhood and adolescence age. The reference, here, is to a (...) pedagogy of bereavement, grounded in attentive categories of analysis and in educative methodologies, able to strengthen life value and to activate an existential planning. It should act in the purpose of allowing each orphaned subject — due to femicide —being capable of building his/her own meaningful future, worthy to be wished and towards which addressing the own search of meaning. (shrink)

Few assumptions, argues Mara van der Lugt, are so stagnant, so rigid, so deeply walled in as the assumption that the decision to have children is by default a good thing; that having children is one of the most elevated aspects of human activity, and, indeed, of the human condition. This book is conceived as an open and reflective challenge to that assumption. The author argues that there are two questions in life that every person needs to answer for themselves: (...) one is the question of religion; the other is the question of begetting, a term which she chooses deliberately to restore a sense of 'strangeness and magnitude' to the idea. What does it mean to bring a new creature into the world? Or rather what does it mean to decide to perform an act of creation? What does it mean to make the decision that life is worth living on behalf of a person who cannot be consulted? To ask this question is to interrogate one's own responsibility and commitments, morally, philosophically, and personally. The question of begetting can never be purely one of preference or inclination, however we might wish it to be. This book is the author's attempt to raise some of these questions, if not fully to answer them. It is both a personal and philosophical exercise of filling out that moral background, in full awareness of the things that are at stake, and not in judgment but out of concern and compassion both for creators and created, and for those who are not yet created and those who are not (or not yet) creators. (shrink)

ZusammenfassungEines der medizinischen Felder, in dem die ethische Diskussion um die „wunscherfüllende Medizin“ am intensivsten geführt wird, ist die Reproduktionsmedizin, die die Erfüllung des „Kinderwunsches“ verspricht. Strittig ist besonders, ob Sterilität als Krankheit definiert wird, die eine medizinische Intervention rechtfertigt, ob sich aus der Sterilität oder Infertilität lediglich ein Abwehr- oder auch ein positives Anspruchsrecht auf medizinische Ressourcen ergibt, ob legitime Fortpflanzungsmedizin Grenzen hat. Nach einer Übersicht über Eckpunkte der nationalen und internationalen Debatte beschreiben wir im zweiten Teil Ansichten zum (...) Status ungewollter Kinderlosigkeit, zum Recht auf Fortpflanzungsmedizin und zur möglichen Legitimität ihrer Begrenzung anhand der Ergebnisse unserer vom Bundesministerium für Bildung und Forschung geförderten Studien. Während der letzten fünf Jahre haben wir u. a. Paare mit und ohne Sterilitätsproblematik sowie verschiedene Expertengruppen qualitativ und standardisiert befragt. Die stark divergierenden Auffassungen konfrontieren wir im dritten Abschnitt mit internationalen Standards, zum anderen mit dem „Capability-Ansatz“ und dem freiheitsfunktionalen Liberalismus von Sen und Pauer-Studer. Dies ergibt, dass die Bereitstellung verschiedener Möglichkeiten der In-vitro-Fertilisations-Behandlung nicht lediglich einen Wunsch auf Elternschaft erfüllt sondern als die gesollte Erfüllung eines normativen Bedürfnissanspruchs begriffen werden muss. (shrink)

Everyone knows that British doctors are emigrating and that other doctors, mostly from the third world, are immigrating to Britain. Also everyone thinks that he knows the reasons why. However, the Edinburgh Medical Group thought the various reasons for this medical migration should be examined more closely, and held a symposium (Chairman, Professor A S Duncan, Professor Emeritus of Medical Education in the University of Edinburgh) to examine the causes for medical migration at the present time. Medical teaching and practice (...) is still basically as it has been developed in the West and so overseas doctors trained in Britain take with them not only the medical knowledge and skills but also the attitudes of the West when they return to their own countries. Consequently they wish to settle in the towns and practise as consultants when the real medical problems in many of the developing countries are those of a rural population needing health care rather than treatment in what have been called `disease palaces'. As speakers made clear, a new responsibility must fall on those training doctors from overseas in the British medical schools to fit them not for the dream world of the sophisticated medical scene but for the realities of working in often badly equipped clinics and dealing with common conditions such as malnutrition and other problems of maternity and child health. The symposium also included discussions as to why British doctors wished to emigrate. Money seemed to be the most compelling motive, but opportunities were being limited for their migration for economic and political reasons. Finally, a look at the whole of the medical scene in Britain: perhaps the standard sought in Britain both by the doctor and the patient is too high and too individualistic. Events will show if this be true. (shrink)

Uterus transplantation is a relatively new intervention. A woman with absolute uterine factor infertility receives, by a surgical procedure, a transplanted uterus, most often by living donation. The uterus recipient may thus become pregnant and conceive her own child. As with any other medical treatment, UTx requires legitimation. The anticipated benefits must outweigh the risks of the medical intervention. The risks and benefits of UTx are by no means unequivocal and cannot be easily determined. The benefits depend on the (...) final evaluation of the suffering to be alleviated by the intervention. In the following, we will analyze the suffering addressed by UTx and discuss its normative value. First, we point out that (a) suffering is generally considered an important normative criterion in medicine as well as in the context of UTx; (b) we then describe the risks and anticipated benefits of UTx for the three persons directly concerned: the child, the donor, and the recipient; (c) we further analyze the suffering addressed by UTx. The intervention addresses a form of existential suffering. We discuss the common notion that existential suffering should be evaluated from the subjective perspective of the sufferer; (d) afterwards, we argue that in a social practice like medicine, a one‐sided evaluation stemming from the sufferer alone is not sufficient; and (e) finally, arguments from a societal perspective lead us to the conclusion that the existential suffering addressed by UTx does not possess a sufficiently strong normative value to legitimize a high‐risk, expensive procedure. (shrink)

We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be (...) a carrier of a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case series has a qualitative (...) retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

Ethical medical decision-making for a child is generally navigated with various standards and models that have been developed to address its complexities. A case is presented of the parents’ refusal of a surgical procedure for their child considered by medical providers as essential and potentially lifesaving, along with the ethical debate of whether the parents’ decision was in the child’s best interest and whether their refusal reached a threshold to report and seek state intervention. Utilizing the best (...) interest standard and additional ethical decision-making tools, the ethicists helped the medical team accept the parents’ decision as reasonable, thus avoiding involvement with Child Protective Services. It is my goal to clarify the parents’ decision as reasonable and as honoring their child’s best interests and inherent dignity through the lens of Catholic anthropological and moral principles. These strengthen the ethical and moral arguments for the parents’ decision and the opposition to state intervention. (shrink)

This response to “A rational cure for pre-reproductive stress syndrome” first suggests it is existence that is essential and prerequisite to everything good or bad, therefore it deserves to be protected and respected. Secondly, it argues that every life is worth living, even if it is worse than some other lives, if the only alternative is non-existence. Finally, it takes a critical view of and challenges Häyry’s suggestion that in a good clinical situation, the idea of the irrationality of having (...) children could be a legitimate part of the guidance given, since it is not the counsellor’s or doctor’s duty to advise a couple who wish to have children that it is irrational or even immoral to bring a child into life. (shrink)

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile (...) observation during their child’s hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents’ wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents’ participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Know You Have to Stay … I Wish I Could, I Wish I CouldMegan K. SkaffIn the world of healthcare, I advocate for the scores of youth who have had Adverse Childhood Experiences (ACEs). I work to understand where the child has been so we can learn the extent of the trauma that the child has been through. While working for a facility as (...) the Street Outreach Case Manager, my priority was based mainly on one girl, let us call her Tawny. I knew Tawny was going to be a very difficult client to work with the moment I realized she did not trust anyone in her own life, let alone the facility I worked in. She would not talk to a single staff member. However, being her case manager, it was my job to get her to trust me so I could crack her case and really get down to the problems she was facing. I promised myself the day I met Tawny that I would never cast one judgment upon this girl, and I made good on that promise until this very day.I find it true that we are all raised in different situations. Tawny endured such horrific childhood experiences that she voluntarily entered herself into our organization. My specialty was the homeless and runaway case manager. Hence, the reason she ended up on my caseload. After running many different tests, I learned that her ACEs score was a ten out of ten. To her, everything she had endured that warranted this score was baseline normal; she did not see her experiences as traumatic, she just saw them as a piece of her life. For me as her case manager, looking at this ten was devastating. I wanted to know everything I could that went into this high score. I needed Tawny to learn to trust me so I could understand what was going on in her home life and better understand her and her trust issues.Just a side note, the staff around me strongly hated Tawny. The worst part about this was that she knew it because they vocalized it. The staff [End Page 5] was so horrible that they would not even pretend to her face that they liked her. The one job they had as staff—to make her feel welcomed and loved in an environment full of broken kids—they could not do. There was no question as to why I struggled to build a relationship with my most vulnerable yet strongest client. Tawny would not let anyone see her as vulnerable. She did not want to be vulnerable because to her vulnerability meant weakness.I was determined to build a solid foundation of trust with Tawny. It was difficult, but I did it. At best, this process took weeks, maybe close to over a month. After many days of her asking other staff, "why is this b**** still in here," and her finally, slowly inching closer to me to say, "Sup," and me answering, "Just waiting for you to talk to me." This answer would make her smile, even though she tried hard not to. As much as she did not want it to be true, I was the only person she wanted to hang out with on the floor. She did not want anything to do with the kids or the staff. She knew the kids on the floor were toxic for her, and she wanted a better life for herself. She knew the staff were toxic for her as well.She started to ask daily where I was, so I started making sure I was on the floor every day. I gave her my work cell and wrote it in the call book along with a message that she had permission to call at any time, no matter day or night. Staff hated that. I did not care. Let me tell you, she tested it to its limits. If she called me at 3:00 AM, I would answer. She would say she was calling to say goodnight; when really, she just needed to know someone would be there. She needed to know she could trust me... (shrink)

In this article we explore the underpinnings of what we view as a recent "backlash" in English law, a judicial reaction against considering children's and young people's expressions of their own feelings about treatment as their "true" wishes. We use this case law as a springboard to conceptual discussion, rooted in (a) empirical psychological work on child development and (b) three key philosophical ideas: rationality, autonomy and identity. Using these three concepts, we explore different understandings of our central theme, (...) true wishes. These different conceptual interpretations, we argue, help to elucidate important clinical questions in the area of children's informed consent to treatment. For example, how much should a child's own wishes count in making medical decisions? Does it make a difference if the child or young person is undergoing psychiatric treatment?—if in some sense her wishes are abnormal, not "true" expressions of what she really wants? If the child's wishes do not count, why not? If they do matter but count for less, how much less? We conclude by advocating functional tests of a young person's true wishes, applicable on a case-by-case basis, rather than a black-and-white distinction between "incompetent" children and "competent" adults. (shrink)

In this response article, we challenge a core assumption that lies at the centre of a round table discussion regarding the Pharmacogenetics to Avoid Loss of Hearing trial. The round table regards a genetic test for a variant (mt.1555A>G) that increases the risk of deafness if a carrier is given the antibiotic gentamicin. The idea is that rapid testing can identify neonates at risk, providing an opportunity to prevent giving an antibiotic that might cause deafness. We challenge the assumption that (...) a positive test unequivocally guides antibiotic choice because, aside from the risk of deafness, all antibiotics for neonatal sepsis are equivalent. We argue that this assumption is faulty and has particularly troubling moral consequences. We claim that giving an alternative to gentamicin is potentially providing inferior treatment and thereby may increase the risk of death. Parents and doctors are faced with a terrible choice as a result of positive point-of-care testing (POCT): give gold-standard treatment and risk deafness or give second line care and risk death. While we do not indicate an answer to this choice, what we do argue is that such a deep and difficult choice is one that may make parents wish genetic testing was never undertaken, and therefore, contra some authors in the round table, provides a reason to gain specific consent for POCT. (shrink)

Originally published in 1996, this book presents and analyses children’s reasonings about fundamental metaphysical problems. The first part describes dialogues with children that were constructed on the basis of Descartes’ _Mediations on First Philosophy_ and which look at children’s ideas about the relationships between true and false knowledge, mental images and physical objects, mind and body, personal existence and the external world, dreams and reality, and the existence of the Supreme Being, among others. The second part of the book draws (...) on concepts that children of various ages have about psychological and metapsychological aspects of human reality such as: cognitive and moral development; personal freedom and responsibility; the relationships between conscious and unconscious; living and non-living; and about the fundamental drives of an individual for development and expansion of his or her needs and passions, for eternal life, and for the dreamlike world of fulfilled wishes. The book presents a systematic empirical and theoretical study of the problems, some of which were touched on in Piaget’s early writing but which he later abandoned and which were only sporadically illuminated by other authors, whereas others were completely new to research in developmental psychology at the time. It will still be a helpful guide for developmental psychologists, teachers, educationalists, social workers, lawyers, and other professionals interested in the knowledge that 4- to 14-year-old children have about the most fundamental aspects of reality and human beings. (shrink)

There is a growing trend in European countries for childbearing to occur later in women’s lives. The recent increase in the use of ART, together with the long-term trend towards later childbearing, raises questions as to the acceptable age of childbearing in contemporary society. ART legislation varies considerably across Europe and age limits for access to fertility treatment are rarely defined. The legislation takes into account the preferences of potential parents; children’s preferences, however, are not ascertained. The article discusses a (...) research method used in a survey of older children and young adults. The objective of the survey was to answer the following questions: What age would children prefer their parents to be if they could choose? What are their reasons? Respondents were asked the following question: “How old would you like your mother and father to be when you are 20 (version for respondents younger than 16) or 25 (version for those older than 16) if you could wave a magic wand?” Furthermore, their reasons for wishing a change were identified through an open question, “Why would you like to change the age of your parents?”. (shrink)

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

This critical reflection on the ethical concerns of current practice is underpinned by a systematic synthesis of current evidence focusing on why and how children are held or restrained for clinical procedures within acute care and the experiences of those present when a child is held against their wishes. Empirical evidence from a range of clinical settings internationally demonstrates that frequently children are held for procedures to be completed; younger children and those requiring procedures perceived as urgent are more (...) likely to be held. Parents and health professionals express how holding children for procedures can cause feelings of moral distress expressed as uncertainty, guilt and upset and that this act breaches the trusting and protective relationship established with children. Despite this, children's rights and alternatives to holding are not always respected or explored. Children's experiences and perceptions are absent from current literature. Children and young people have a moral right to have their voice and protests heard and respected and for these to inform judgements of their best interests and the actions of health professionals. Without robust evidence, debate and recognition that children are frequently held against their wishes in clinical practice for procedures which may not be urgent, children's rights will continue to be compromised. (shrink)

This paper analyses Hello Barbie as a commercial artefact to explore how big data practices are reshaping the enterprise of marketing. The doll uses voice recognition software to ‘listen’ to the child and ‘talk back’ by algorithmically selecting a response from 8000 predetermined lines of dialogue. As such, it is a useful example of how marketers use customer relationship management systems that rely on sophisticated data collection and analysis techniques to create a relationship between companies and customers in which (...) both parties are positioned as active participants who are able to obtain what they wish from the interaction. I use dialogic analysis to see how Mattel ‘makes sense’ of the dialogue as a dialogic partner. I argue that, in spite of the rhetoric of instantaneity and personalization, in which the technology is positioned as an immediate response to a child’s imagination, Mattel’s dialogic communication is both asynchronous and carefully crafted to fit the child’s responses within predetermined consumer subjectivities that are crafted to encourage particular kinds of consumption. Although the dialogue spoken by Hello Barbie is able to situate Barbie as an active subject, the control exercised by the company in order to elicit data for customer relationship management purposes and steer the dialogue to brand-friendly messages relegates the child to a passive role. Accordingly, the doll fails to deliver the promises of customer relationship management. (shrink)

Policy-makers have attempted to frame the ethical requirements that are relevant to the creation of human beings via reproductive technologies. Various reports and laws enacted in New Zealand, Canada, Australia, and Britain have introduced tests for how we should weigh child welfare when using these technologies. A number of bioethicists have argued that child welfare should be interpreted as a “best interests” test. Others have argued that there are ethical reasons why we should abandon this kind of test. (...) I will argue that at least some of the relevant policy can be interpreted as requiring those wishing to exercise their procreative liberty to have a reasonable plan to care and nurture any resulting child, thereby respecting the internal preconditions of that liberty. This interpretation of child welfare requirements answers some of the ethical worries about a child welfare test. (shrink)

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

Psychiatry’s inchoate wish for a paradigm shift and the biopsychosocial model of mental illness’ critically examines the much discussed goal of a paradigm shift in psychiatric taxonomy. The chapter first highlights some illustrative calls for such a change and then sets these against the Kuhnian account of science from which the idea is taken, highlighting the connection to incommensurability. Relative to a distinction drawn from Winch, between putative sciences where the self-understanding of subjects plays no role and those where (...) it is fundamental, psychiatry falls into the latter kind. This suggests that the wish for a paradigm shift in psychiatry is either incoherent or a wish for a radical but unpredictable overhaul of a significant aspect of our self-understanding as subjects and agents. The biopsychosocial model of mental illness is thus a helpful reminder of the cost of a paradigm shift in psychiatry. (shrink)

Thirty-one essays by thirty psychologists and philosophers, treating, roughly, methodological, systematic, and miscellaneous "issues." Some of the psychologists and—alas—too many of the philosophers simply put in an appearance; but there is some excellent material. Piaget's "Psychology and Philosophy" points out the priority of the symbolic abstraction from action rather than language in the learning process of the child, a fact which should have consequences for certain philosophical theories of meaning. Bertocci ably defends a "Personalistic Psychology," while, in the best (...) of the philosophers' contributions, R. S. Peters distinguishes between active and passive emotions—between wanting and wishing—using Freud as both a source and exemplum. Pribram argues philosophically and neurophysiologically for what he terms a "Structural Pragmatism"; a similar view is developed very suggestively by Razran in his essay, "Evolutionary Psychology: Levels of Learning—and Perception and Thinking." The holistic as opposed to the atomistic approach in psychology gets in the final word in Wolman's "Principles of Monistic Transitionism." The editor provides an excellent, annotated bibliography of books on philosophical psychology.—E. A. R. (shrink)

Health care workers or others may wish to override parental decisions because of their impact on the health or safetySafety of a child or others. Justification of such an action requires two types of principle: an authorityAuthority principle that designates the process for reversal, and anPrincipal, interventionintervention principleIntervention principle that specifies the grounds for reversal. It is generally accepted that states may overruleOverruleparentsParents’ decisions for good cause. I argue that the role of the state is to provide sufficient (...) protection against parental malfeasance. Parental malfeasance can be construed as either exposing a child to harmHarm or as insufficient defense of the child’s interestsChild's interests. I propose a test to determine what sorts of parental decisions might trigger intervention. I also propose constraints on government action to minimize government unfairness in applying the test. I show how this plays out in application. (shrink)

Law firms, bars and lawyers associations qualify as ‘enterprises’ in the sense of all international CSR norms such as the UN Global Compact, the UN Guiding Principles, the OECD Guidelines for Multi...

This book examines the question of what parental obligations procreators incur by bringing children into being. Prusak argues that parents, as procreators, have obligations regarding future children that constrain the liberty of would-be parents to do as they wish. Moreover, these obligations go beyond simply respecting a child’s rights. He addresses in turn the ethics of adoption, child support, gamete donation, surrogacy, prenatal genetic enhancement, and public responsibility for children.

The compromise position that accepts the use and derivation of stem cells from spare in vitro fertilisation embryos but opposes the creation of embryos for these purposes is a very weak ethical position. This paper argues that whatever the basis is on which defenders of this viewpoint accord intrinsic value to the embryo, once they accept the creation and sacrifice of embryos to benefit infertile people with a child-wish, they do not have a sound moral argument to condemn (...) the creation and sacrifice of embryos to benefit ill and injured people. (shrink)

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.First, I place deference to grandparents as decision makers in the context of surrogate decision making more (...) generally.Second, the maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment. (shrink)

Durch Fortschritte in der modernen Reproduktionsmedizin ist es Frauen heute möglich, auch nach der Menopause mit eigenen Eizellen schwanger zu werden. Damit wird die Fortpflanzung im homologen System auch im Alter zu einer realistischen Option. Gegen derartige späte Schwangerschaften gibt es vielfältige Argumente, die vor allem auf mögliche Schädigungen aufgrund des hohen Alters der Mutter verweisen. Maßnahmen der Anti-Aging-Medizin zum Erhalt bzw. zur Verbesserung der kognitiven und physischen Leistungsfähigkeit im fortgeschrittenen Alter könnten diese Einwände gegen den Einsatz von Reproduktionstechniken nach (...) der Menopause entkräften. Der Beitrag geht der Frage nach, wie erstrebenswert postmenopausale Schwangerschaften unter diesen Voraussetzungen eigentlich sind. Es wird die These vertreten, dass eine Schadensargumentation für eine ethische Bewertung allein nicht ausreichend ist, sondern auch Überlegungen zu Status und Authentizität des Kinderwunsches, zum Selbstverständnis der Medizin, zur Autonomie der Betroffenen sowie zur Natürlichkeit der Lebensführung berücksichtigt werden müssen. Darüber hinaus zeigt sich, wie Entwicklungen in zwei spezifischen Anwendungsbereichen (Anti-Aging- und Reproduktionsmedizin) in einer gemeinsamen Betrachtung zusammengeführt und mit Gewinn für allgemeinere medizinethische Überlegungen bewertet werden können. (shrink)

Members of the Clinical Ethics Consultation Affairs Standing Committee of the American Society for Bioethics and Humanities present a collection of insights and recommendations developed from their collective experience, intended for those engaged in the work of healthcare ethics consultation.

For nearly a century, and until very recently, the majority of U.S. states required a blood test for marriage license applicants. The tests identified people with conditions formerly designated as "venereal diseases," most importantly gonorrhea and syphilis. Those who tested positive were barred from civil marriage. Although the premarital testing requirement is no longer a feature of state law, numerous related enactments are common features of law in most states.The historical literature describing the rise and fall of laws prescribing marriage (...) restrictions related to VD has treated those enactments as public health measures, meant primarily to forestall the spread of disease to intimate partners. But laws to... (shrink)

This book is not a list or an overview of various theories of ethics. Nor is it a didactic manual for specific teaching units on moral education aimed at some group based on age or a particular theme (although some educational frameworks will be proposed). As the title suggests, the book intends to seek the starting points or foundations without which no moral education would be possible. The goal is to formulate and tackle the key questions that precede all moral (...) education. What makes ""good vs. evil"" language possible and meaningful? Can virtue be taught and learned? What makes our actions good? What is the condition of human nature? Are we naturally good, or evil? What constitutes an educator's right to morally influence anyone else (not just a child)? What is the goal of moral education? What does a morally educated person look like? And how can we ensure the coveted moral result? Or--in the words of Jan Amos Comenius, the ""teacher of nations""--how to educate a person to not only know what is good, but also to want what is good, and to do what is good ""even when no one is looking?"" ""I wish I would have had Jan Habl's concise, passionate, and eminently readable book available as a text for my ethics courses during my thirty-six years of teaching at colleges and universities in Canada. Habl not only raises the alarm about a moral crisis in Western societies today, but also provides a careful treatment of some oft-neglected presuppositions of moral education. The concluding chapter introduces us to Jan Amos Comenius, a seventeenth century Czech philosopher, theologian, and pedagogue, from whom we have much to learn about a better approach to moral education."" --Elmer Thiessen, Emmanuel Bible College ""With a sound and broad grasp of ethical (moral) theorists, Jan Habl incisively critiques the fallacies of popular theories, rendering them ineffectual if not dangerous. Then, drawing on Czech educator/philosopher Comenious, he persuasively advances a theistic proposal for nurturing moral persons and communities. Immensely timely, never more needed, a rich, compelling read for our contemporary societies if we wish for a civil and peaceful existence for ourselves and future generations. Highly recommended."" --Duane H. Elmer, Trinity International University ""You have in your hands a text by someone I take to be one of the very serious young moral philosophers of our time. The profundity of his analysis of the need for moral education reminds me of the style of analysis of one of the great moral philosophers of the final decades of the twentieth century, Alasdair MacIntyre."" --Thomas K. Johnson, World Evangelical Alliance Jan Habl is a professor of pedagogy at universities in Hradec Kralove and Usti nad Labem (Czech Republic). He has taught systematic theology and ethics at the Evangelical Theological Seminary in Prague. He has authored a number of books and studies in the areas of philosophy of education, ethics, and pedagogy, including On Being Human(e) (2016); Teaching and Learning Through Story, Comenius' Labyrinth and the Educational Potential of Narrative Allegory (2014). (shrink)

David Albert Jones recently proposed an analogy between adoption and gender transitioning. Jones notes that adoption grants a child a social identity that is distinct from the natal identity and suggests that a similar situation might obtain in the case of gender transitioning. According to this proposal, a biological male who wishes to be called a woman is not assuming a false identity. Adoption and gender transitioning are significantly different, however: adoptive sonship participates in natural sonship in a way (...) that is not true of the relationship between a biological woman and a man who wishes to be called a woman. Attention is given to different forms of analogy, leading to the conclusion that the use of the word woman for a biological male would be either a metaphor or a very weak analogy. In contrast, the term son as applied to an adopted boy fulfills the fundamental signification of that word. (shrink)