Background Caring is a core function of nurses and it confers upon them ethical obligations as ethical agents. Failure to carry out such ethical obligations raises ethical concerns. This study was not intended to explore ethical concerns, but the reported findings reveal problems which have ethical implications. This paper aims to elucidate the ethical issues inherent in the findings and propose strategies to mitigate them. Research design and methods An exploratory-descriptive qualitative design was used within a larger Action Research Study. (...) Data were collected through focus group discussions with nurse/midwives, and through exit interviews which were conducted with the women who participated in the study on their day of discharge. Six focus group discussions and thirty exit interviews were conducted, and data were analysed through thematic analysis. Participants and research context The study took place at selected maternal and child healthcare settings in Lilongwe, Malawi. The participants were nurse/midwives and women who were admitted in maternal and child healthcare settings and were purposively sampled. Ethical considerations Ethical approval was obtained from the relevant ethics committee and all ethical guidelines were followed in the conduct of the study. Findings The findings are presented under three themes which emerged from the data. The findings reveal effects of staff shortages on patient outcomes, problems experienced in low resource clinical settings and disrespectful nurse/patient communication. Conclusion The findings reveal that institutional factors constrain moral agency and patient safety is severely compromised in some of the clinical settings in Malawi which raises serious ethical concerns. (shrink)

The essays in this special issue of HEC Forum provide reflections that make explicit the implicit anthropology that our current pandemic has brought but which in the medical ethics literature around COVID-19 has to a great extent ignored. Three of the essays are clearly “journalistic” as a literary genre: one by a hospital chaplain, one by a medical student in her pre-clinical years, and one by a fourth-year medical student who reports her experience as she completed her undergraduate clerkships and (...) applied for positions in graduate medical education. Other essays explore the pandemic from historical, sociological, and economic perspectives, particularly how triage policies have been found to be largely blind to structural healthcare disparities, while simultaneously unable to appropriately address those disparities. Central issues that need to be addressed in triage are not just whether a utilitarian response is the most just response, but what exactly is the greatest good for the greatest number? Together, the essays in this special issue of HEC Forum create a call for a more anthropological approach to understanding health and healthcare. The narrow approach of viewing health as resulting primarily from healthcare will continue to hinder advances and perpetuate disparities. Health outcomes result from a complex interaction of various social, economic, cultural, historical, and political factors. Advancing healthcare requires contextualizing the health of populations amongst these factors. The COVID-19 pandemic has made us keenly aware of how interdependent our health as a society can be. (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.

Background: Hospitalized children have the right to “partake in practices related to their treatment and care.” Midwives and nurses have important roles and responsibilities regarding the protection and enforcement of these rights, such as providing information and advocating for children. Objectives: This study aims to determine the attitudes of midwives and nurses toward their roles and responsibilities in the implementation of child rights in healthcare services and the factors affecting their attitudes. Methods: This descriptive cross-sectional study included 122 (...) midwives and nurses in total. The data were collected through a questionnaire. Ethical considerations: Written permission was obtained from an ethics committee in the center of the city where the research was conducted. Results: The mean age of the participants was 36.70 ± 8.03 years; 58.9% of midwives and nurses stated that they understood the child’s consent about the treatment by looking at the child’s facial expression; 36% of midwives and nurses stated that children could not participate in decisions regarding their own health. It was observed that obtaining the child’s consent in matters related to treatment does not make any difference between midwives and nurses. The rate of the midwives stating that they would report suspicious violence-neglect and abuse was found to be higher. Conclusion: The variables of the unit of employment, the state of having children, choosing the profession and practicing in it willingly, and getting training on children’s rights make a difference in terms of children’s rights in healthcare services. Midwives and nurses should be reminded of child rights in healthcare services through regular in-service training programs. (shrink)

This study examines girl child abuse in an internally displaced people's camp in north‐central Nigeria and the response of community health workers. The conflict in Benue State is caused by religious differences between the natives (Tiv people) and the invading Fulani herdsmen. During these conflicts, women and girls were displaced, and they were kept in internally displaced persons (IDPs) located in different parts of the state. Literature has been extensively written on internal displacement in Nigeria, but none has been (...) able to elucidate the health needs of girls and the various abuses girls and women are suffering in IDP camps. In this study, literature was extended (1) to explore the environment of the girl child in IDP camps, (2) to identify reasons for the abuse of the girl child in IDP camps, (3) to investigate the impacts of the abuse on the girl child in IDP camps and (4) to investigate how healthcare workers could be used to alleviate the plight of girl children in IDP camps. This is a qualitative case study, with data obtained from relevant academic literature and personal observation. The data were analysed using content analysis. Findings reveal that the girl child is suffering from psychological, economic and health challenges due to the various forms of abuse they are going through. Following the devastation in Benue State, healthcare workers from the community relocated to neighbouring states. There is a need to recall those healthcare workers and provide them with the necessary materials to assist girls in IDP camps. Recommendations are discussed. (shrink)

Efforts to address child trafficking require intensive collaboration among professionals of varied disciplines. Healthcare professionals have a major role in this multidisciplinary approach. Training is essential for all professionals, and policies and protocols may assist in fostering an effective, comprehensive response to victimization.

In this paper, we examine healthcare organizations’ responses to high profile cases of doctor–parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child’s interests or who has decision‐making authority, but also the stakes of public trust in healthcare practitioners and organizations and the wide scale spread of medical misinformation. These higher stakes call for (...) robust organization‐level responses. There are responsible and thoughtful ways for healthcare organizations to directly engage with these cases. Hospitals should seek an alliance with the parents around the goal of public discussion and utilize web‐based platforms to provide the public with information about medical conditions, experimental treatments, and how clinical ethics deliberation in hospitals works. We outline five important lessons for healthcare organizations to keep in mind when responding to such cases. Approached with care, these cases could become “teachable moments” for both healthcare organizations and society. (shrink)

Increasingly, transgender minors are seeking medical care such as puberty-suppressing or gender-affirming hormone therapies. Yet, whether these interventions should be performed at all is highly controversial. Some healthcare practitioners oppose irreversible interventions, considering it their duty to protect children from harm. Others view minors, like adults, as transgender individuals who must be protected from discrimination. The underlying ethical question is presented as a problem of priority. Is it primarily relevant that minors are involved? Or should decision makers focus on (...) the fact that they treat transgender individuals? The paper explores the relevance for medical practice. We provide results of an interview study with German healthcare professionals. We discuss the general question whether prioritization among different group memberships of the same person is ethically defensible. We conclude that priority conflicts between group memberships of the same person can be deceptive and should be addressed by an intersectional approach. Eventually, we discuss practical implications. (shrink)

What standard or principle should guide decisionmaking concerning the permissibility of allowing children to be organ donors? For a long time, it has been widely assumed that the best interest of the child is the appropriate standard. But recently, several critics have charged that this standard fails to give due weight to the interests of the family and the intimate relationships that the family makes possible.1,2 This article reviews and rejects both the best-interest standard and the alternative standard recommended (...) by the critics. I then propose a new standard to help parents, healthcare professionals, and judges decide when it is and is not permissible for children to serve as organ donors. This new standard modifies and broadens the best-interest standard to allow it to account adequately for the contribution that intimate relationships make to the well-being of children. (shrink)

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study (...) was to describe the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (shrink)

Nurses have an important role in preventing and responding to child abuse and neglect. This paper reports on nurses' perceptions of how organisational systems and hierarchies shaped their capacity to respond to child abuse and neglect. This is one of four key themes identified through an inductive analysis of data from a broader qualitative study that explored nurses' perceptions and experiences of keeping children safe. The study was guided by social constructionist theory, and data were collected through in‐depth (...) interviews with nurses working with children in Australia (n = 21). Key findings showed that nurses experienced many challenges to responding to child abuse, including difficulties sharing information, fear of making mistakes and inflexible systems of care. This was underpinned by an organisational ‘rule‐centred’ culture of following policies at the expense of maintaining an explicit focus on children's needs. These findings demonstrate first the importance of creative and flexible thinking from individual professionals, so policies are enacted with a clear child focus. Second, they highlight the need for leadership to enact organisational and systemic cultural change that maintains a genuinely child‐centred approach. (shrink)

The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a “death warrant”. This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm (...) is parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba. (shrink)

Child maltreatment is conceived as a public health problem. Therefore, it is appropriate to analyse the explanatory models that deal with this behaviour, reflecting these postulates within the panorama of health education, which makes health professionals responsible for taking action. In order to do this, the theoretical context and the awareness of nursing students in relation to these theories must be analysed. In turn, the use of information and communication technologies in this field should be valued, due to their (...) capacity to manage and systematise information, becoming a relevant tool when training future nursing professionals. Without forgetting that health informatics is a spectrum of multidisciplinary fields that includes the study of the design, development and application of computational techniques to improve healthcare. A review of the scientific literature was carried out, for which primary and secondary sources were consulted, tracing a search for data thanks to the keywords: ‘nursing’; ‘abuse’; ‘children’; ‘education’ and ‘theory’. During the second half of the 20th century, several health paradigms have been developed, which present different pathways to health education. There have also been three generations of theoretical models that attempt to analyse the public health problem of child maltreatment. This reflects the need for a transdisciplinary approach to child abuse, where there is no one explanatory model that is more appropriate than another, but where the choice of the health education paradigm and, within this, the most recommendable theory will depend on each situation. (shrink)

Healthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services. Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this (...) systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative. A wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced. Eighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence. There is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area. (shrink)

At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations, as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.

Background: Confidentiality lies at the core of medical ethics and is the cornerstone for developing and keeping a trusting relationship between nurses and patients. In the wake of the HIV epidemic, there has been a heightened focus on confidentiality in healthcare contexts. Nurses’ follow-up of HIV-positive women and their susceptible HIV-exposed children has proved to be challenging in this regard, but the ethical dilemmas concerning confidentiality that emerge in the process of ensuring HIV-free survival of the third party – (...) the child – have attracted limited attention. Objective: The study explores challenges of confidentiality linked to a third party in nurse–patient relationships in a rural Tanzanian HIV/AIDS context. Study context: The study was carried out in rural and semi-urban settings of Tanzania where the population is largely agro-pastoral, the formal educational level is low and poverty is rife. The HIV prevalence of 1.5% is low compared to the national prevalence of 5.1%. Methods: Data were collected during 9 months of ethnographic fieldwork and consisted of participant observation in clinical settings and during home visits combined with in-depth interviews. The main categories of informants were nurses employed in prevention of mother-to-child transmission of HIV programmes and HIV-positive women enrolled in these programmes. Ethical considerations: Based on information about the study aims, all informants consented to participate. Ethical approval was granted by ethics review boards in Tanzania and Norway. Findings and discussion: The material indicates a delicate balance between the nurses’ attempt to secure the HIV-free survival of the babies and the mothers’ desire to preserve confidentiality. Profound confidentiality-related dilemmas emerged in actual practice, and indications of a lack of thorough consideration of the implication of a patient’s restricted disclosure came to light during follow-up of the HIV-positive women and the third party – the child who is at risk of HIV infection through mother’s milk. World Health Organization’s substantial focus on infant survival (Millennium Development Goal-4) and the strong calls for disclosure among the HIV-positive are reflected on in the discussion. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of (...) capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

The American College of Nurse-Midwives, American Society for Pain Management Nursing, American Academy of Pediatrics, and other largely US-based medical organizations have argued that at least some forms of non-therapeutic child genital cutting, including routine penile circumcision, are ethically permissible even when performed on non-consenting minors. In support of this view, these organizations have at times appealed to potential health benefits that may follow from removing sexually sensitive, non-diseased tissue from the genitals of such minors. We argue that these (...) appeals to “health benefits” as a way of justifying medically unnecessary child genital cutting practices may have unintended consequences. For example, it may create a “loophole” through which certain forms of female genital cutting—or female genital “mutilation” as it is defined by the World Health Organization—could potentially be legitimized. Moreover, by comparing current dominant Western attitudes toward female genital “mutilation” and so-called intersex genital “normalization” surgeries (i.e. surgeries on children with certain differences of sex development), we show that the concept of health invoked in each case is inconsistent and culturally biased. It is time for Western healthcare organizations—including the American College of Nurse-Midwives, American Society for Pain Management Nursing, American Academy of Pediatrics, and World Health Organization—to adopt a more consistent concept of health and a unified ethical stance when it comes to child genital cutting practices. (shrink)

:The Chinese Communist Party government has been forcefully promoting itsjihua shengyu program, known as the “one-child policy,” for more than three decades. A distinctive authoritarian model of population governance has been developed. A pertinent question to be asked is whether China’s one-child policy and the authoritarian model of population governance have a future. The answer must be no; they do not. Although there are many demographic, economic, and social rationales for terminating the one-child policy, the most fundamental (...) reason for opposing its continuation is drawn from ethics. The key ethical rationale offered for the policy is that it promotes the common social good, not only for China and the Chinese people but for the whole human family. The major irony associated with this apparently convincing justification is that, although designed to improve living standards and help relieve poverty and underdevelopment, the one-child policy and the application of the authoritarian model have instead caused massive suffering to Chinese people, especially women, and made them victims of state violence. A lesson from China—one learned at the cost of individual and social suffering on an enormous scale—is that an essential prerequisite for the pursuit of the common good is the creation of adequate constraints on state power. (shrink)

On September 28, 2002, 11-year-old Jakob von Metzler, a banker's son, was abducted on the way to his parents' house in Frankfurt. A sum of one million Euro was demanded for his release. Three days after Jakob's disappearance, Magnus Gäfgen, a 32-year-old law student, collected the ransom from the arranged tram stop in Frankfurt during the night. While under observation by the police, he ordered a new Mercedes and booked a holiday abroad. Seventy-six hours after Jakob's disappearance, the police arrested (...) Gäfgen and his 16-year-old girlfriend while simultaneously searching his flat. There they found the missing ransom, but no sign of Jakob. a b. (shrink)

Despite the much-discussed court cases in the 1970s that permitted some sibling-to-sibling kidney donations from minors,1 principles that can guide parental, medical, or judicial decisionmaking are neither clearly articulated nor uncontroversial.

Background: The ability to consent promotes children’s access to health services. Healthcare providers should assess and arrive at a clinical judgement about the child’s maturity and mental capacity to obtain valid consent. Research objective: The objective of the study was to determine practices employed by South African healthcare providers to obtain consent for treatment from children. Research design: A qualitative, explorative, descriptive research design was used and the study was contextual. Participants and research context: In all, 24 (...) healthcare providers (professional nurses and medical practitioners) were purposively sampled from a hospital and primary health clinics. Semi-structured interviews were used. Ethical consideration: Ethical approval was obtained from the Institutional Review Board and gatekeepers. Written informed consent was obtained from each participant. Findings: Healthcare providers’ current practices in obtaining consent from children revealed inconsistency in implementation as well as the yardstick used to determine children’s mental capacity. Building trust with children, sharing information and assessment were interlinked in obtaining consent. Discussion: The inconsistent practice has implications for children’s access to healthcare services. Conclusion: Inconsistent practices in the implementation of consent laws have the potential to violate children’s rights to bodily and psychological integrity, access to health services and having their opinions heard and be taken into consideration. Through uncovering the current perceptions and practices and a literature review, guidelines intended for use by the Department of Health could be developed. (shrink)

One million cases of child maltreatment and twelve hundred child deaths due to abuse and neglect occur per year. But since many cases of abuse and neglect remain either unreported or unsubstantiated due to insufficient evidence, the number of children who are abused, neglected, and killed at the hands of family caregivers is probably higher. One approach to combat child abuse in the U.K. has been the employment of hospital-based covert video surveillance (CVS) to monitor parents suspected (...) of Munchausen Syndrome by Proxy (MSBP). The use of CVS, however, raises concerns about voluntary informed consent, research on human subjects, privacy, and the appropriateness of healthcare providers to conduct CVS. More broadly, the use of CVS raises concerns about the ethical life of healthcare institutions and their moral obligations to the families and communities they serve. The U.K. protocol for CVS is examined in light of these concerns. Three alternative CVS protocols and two procedures for selecting a protocol are then proposed for use in the U.S. The paper concludes that any CVS protocol selected for use by hospitals ought to be selected by means of open and democratic processes that permit community input and, subsequently, the possibility of a consensus on the moral status and scope of CVS. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of (...) capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children’s cancer care, and (...) specifically bone marrow transplant, we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information. (shrink)

Our world is a world in which biotechnological tools are used by parents and healthcare providers to engineer future babies' bodies according to their wishes, a world in which there is no clear distinction between children as parents' "property" and children as autonomous beings, where children are exploited economically, politically, physically, and emotionally by adults, and where, in democratic countries, immigrants' children are taken prisoner and separated from their families because they dare to cross state borders. In such a (...) world, Claudia Wiesemann's book, Moral Equality, Bioethics, and the Child, is extremely relevant and important. In her work, the author seeks to establish moral equality for children and at the same time delineates crucial ethical foundations for our moral human existence. The reader is taken through a theoretical, practical, and emotional journey that brings together ethical and bio-ethical dilemmas from the perspectives of both the child and the adult. (shrink)

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding (...) result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

BackgroundWhile fertility preservation is recommended practice for paediatric oncology patients, it is increasingly being considered for transgender children and young people in paediatric care. This raises ethical issues for clinicians, particularly around consent and shared decision-making in this new area of healthcare.MethodsA systematic review of normative literature was conducted across four databases in June 2020 to capture ethical considerations related to fertility counselling and preservation in paediatric transgender healthcare. The text of included publications was analysed inductively, guided by (...) the Qualitative Analysis Guide of Leuven.ResultsTwenty-four publications were identified for inclusion. Four key ethical considerations emerged from this literature: access to fertility preservation, conscientious objection, decision-making capacity of children and young people, and shared decision-making.ConclusionIn the identified literature, there is consensus that transgender children and young people should not be refused access to fertility preservation services solely due to their gender identity, and that clinicians with conscientious objections to fertility preservation for this group have an obligation to refer on to willing providers. Factors that create ethical complexity in this area of paediatric care include the child’s age, mental health, and parents’ views. (shrink)

This book provides a multidisciplinary analysis of the potential conflict between a government’s duty to protect children and a parent’ right to raise children in a manner they see fit. Using philosophical, bioethical, and legal analysis, the author engages with key scholars in pediatric decision-making and individual and religious rights theory. Going beyond the parent-child dyad, the author is deeply concerned both with the inteests of the broader society and with the appropriate limits of government interference in the private (...) sphere. The text offers a balance of individual and population interests, maximizing liberty but safeguarding against harm. Bioethics and law professors will therefore be able to use this text for both a foundational overview as well as specific, subject-level analysis. Clinicians such as pediatricians and gynecologists, as well as policy-makers can use this text to achieve balance between these often competing claims. The book is written by a physician with practical and theoretical knowledge of the subject, and deep sympathy for the parental and family perspectives. As such, the book proposes a new way of evaluating parental and state interventions in children's’ healthcare: a refreshing approach and a useful addition to the literature. (shrink)

The main public health advantages of examining gene by environment interactions in externalizing behavior lie in the realm of personalized interventions. Nevertheless, the incorporation of genetic data in randomized controlled trials is fraught with difficulties and raises ethical questions. This paper has been written from the perspective of developmental psychologists who, as researchers, see themselves confronted with important and in part new kinds of ethical questions arising from G × E research in social sciences. The aim is to explicate and (...) discuss ethical questions, based on the conviction that what is ethically salient in a research setting will also be relevant in that area of public healthcare incorporating research findings. The ethical questions discussed include: whether it is ethically responsible to withhold an effective treatment; to what extent genetic results should be disclosed; whether researchers should be allowed to collect genetic data of both child and parent; and what are costs and benefits of personalized interventions based on screening. We made an attempt to address these questions, but it is up to researchers to determine whether the solutions are suitable for their G × E research in social sciences. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill NeonateMichelle ProngEditor’s Note. The details of the patient case presented below have been modified to protect the family’s privacy. Despite these modifications, the author has made every effort to preserve the story’s clinical, social, and ethical nuances.The patient was born at 31 weeks with Trisomy 13 and lived her entire (...) life in the NICU. She was born to a 16-year-old mother (who I will call M.H.) as the result of an unintended pregnancy. This child was just about a month old when I became part of her care team. The patient was born with a severe congenital heart defect that our pediatric cardiac surgery team—as well as surgical teams at multiple other academic children’s hospitals—determined to be inoperable. Because of her severe heart defect, she required significant respiratory support throughout her life and continuous IV medications to keep her organs perfused.When I came on service, M.H. visited irregularly and depended on her mother (the patient’s grandmother, who I will call D.R.) for transportation. Social work had arranged for M.H. to have daily transportation to the hospital after school and work; however, M.H. was denied the opportunity to spend the night with her infant. It was against hospital policy for minors to stay overnight as visitors, and additional visitation guidelines related to COVID precautions were also in place at the time. As her biological mother, M.H. was designated as the patient’s healthcare decision-maker. The inability for M.H. to stay overnight on the basis of her age despite being the patient’s parent and healthcare decision-maker generated significant moral distress for several members of the care team. The social dynamic between M.H. and D.R. was such that D.R. was far more participatory in rounds and goals of care conversations, and M.H. was almost always reserved and withdrawn. On multiple occasions, different team members attempted to have conversations directly with M.H. She either was not engaged in the conversation, would answer with short phrases, or, when D.R. was present, would defer to D.R. to speak for her.Throughout the patient’s life, D.R. seemed to be the driving force behind most treatment and goals of care decisions. In multiple conversations I had with the family, both one-on-one with M.H. and jointly with M.H. and D.R., it was made clear that they wanted “everything done” and were hopeful for “a miracle.” D.R. emphasized that she didn’t want anyone to “give up” on the patient and wanted to exhaust all possible options for a cure. Overall, our team had become increasingly concerned that the medical decision makers for this patient did not comprehend the very poor prognosis of her congenital cardiac anomaly, either with or without surgery. As the medical team, we would be subjecting this child to harm that would be unlikely to change her prognosis. [End Page 19]Our NICU team, as well as various other teams, discussed the case repeatedly without a resolution that felt satisfactory. A complicating factor for this particularly socially and ethically challenging case was that the team turned over relatively frequently during the patient’s long-term stay, making it difficult for each successive team to understand what had already been done for this patient and her family. We decided to seek help from the Clinical Ethics Consulting (CEC) service. My expectation for the CEC service was that the consultant would help our team think differently about both the clinical and social elements of the situation and help us come to a resolution since we could not figure out a good solution on our own.Our consult question for the CEC was fourfold: 1) Did the patient’s mother meet criteria for an emancipated minor (to get around the visitation policy), 2) Is M.H. the appropriate healthcare decision maker given her lack of engagement in goals of care conversations and perceived understanding of the severity of her... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Best Love of the Child: Being Loved and Being Taught to Love as the First Human Right ed. by Timothy P. JacksonMary M. Doyle RocheReview of The Best Love of the Child: Being Loved and Being Taught to Love as the First Human Right EDITED TIMOTHY P. JACKSON Grand Rapids, MI: Eerdmans, 2011. 416 pp. $28.00With The Best Love of the Child, Eerdmans adds (...) to an already impressive roster of books on children and families. While previous contributions to the field have challenged the appropriateness of rights in addressing the needs of children, Best Love explores the “best interest” standard that is commonly used by courts and international bodies to adjudicate cases involving children. The book’s fundamental claim is that what is “best” for children involves being loved and being taught to love. Although the essays in this volume acknowledge that the primary locus for the love and care of children is the family, they also engage other contexts including religious communities, courts, and legislative bodies.In a section dealing with social-psychological perspectives on this theme, Peter Benson and Eugene Roehlkepartain make the case that doing the best for children requires shifting from a deficit model that focuses on what children lack to a model that emphasizes their developmental assets. Other chapters in this section highlight the ways parents can pursue the best for children by introducing them to spiritual practices rooted in love for God and compassion [End Page 231] toward others, and by providing them with a narrative-rich environment that deepens bonds between adults and children.A section on historical perspectives continues this trajectory by highlighting the vocations of children from the late thirteenth century on to the early modern period. In his concluding essay in this section, Charles Reid links historical and contemporary concerns by focusing on the right to life and its implications for analyses of war and healthcare access.In a section on philosophical and theological perspectives, Cynthia Willett challenges liberal understandings of rights in view of the experiences of children and argues for an approach that recognizes a central paradox of human freedom: that relationships of interdependence do not weaken freedom but rather enhance it. This paves the way for developing a sense of collective responsibility for children based on shared commitments to justice and solidarity that reach beyond the privatized family. Richard Osmer tackles the concept of original sin in order to advance a vision of a missional church in which congregations work with families to encourage authoritative—rather than authoritarian—styles of parenting that model mutual forgiveness. Marcia Bunge’s contribution is the most practical, offering a list of practices for children, families, and congregations for nurturing children’s vocations.In a concluding section on legal perspectives, Michael Broyde notes that, in the context of custody cases in Jewish law, the primary question is not who loves the child the most but rather who can best meet the child’s needs in an atmosphere of respect. Margaret Brinig and Steven Nock argue that law can, in fact, foster the love of children and the potential children have for becoming loving themselves by promoting family structures that are stable and afforded status in the community. In this way families can model the covenantal relationships of unconditional love in which children thrive. The collection concludes with an essay by Don Browning that emphasizes weaving together love’s affective elements with the very practical activities of caring for children and respecting their emerging selves.By inviting thoughtful reflection on how loving and being loved are central to the well-being of children in families and other institutions, Best Love makes an important contribution to the interdisciplinary field of childhood studies. The book is best suited for graduate students, although the essays by Osmer and Bunge are relevant to pastoral settings. [End Page 232]Mary M. Doyle RocheCollege of the Holy CrossCopyright © 2015 Society of Christian Ethics... (shrink)

This scoping review mapped the academic literature focused on the therapeutic itinerary of children who seek care in health services and proposed an explanatory model to expand the concept and classification of these health itineraries. A total of 789 articles were reviewed, of which 28 were eligible for inclusion. In these 28 it was possible to observe that the child's therapeutic itinerary is more than a physical path, but also encompasses all choices within a specific social and cultural environment (...) in which the child is inserted. Our proposal is to expand the concept beyond the therapeutic, classifying the itinerary also according to the objective, the decision‐making agent, respect for the presence of company, the health subsystem used, according to the physical continuity of the itinerary, the perception of efficacy of the patient, the nature of the illness, the administration of healthcare, the means of transport used, the person providing information about the itinerary, the planning of the itinerary and its completeness. Knowing the child's itineraries toward healthcare allows the development of innovative discourses and practices for future public policies, through which the principles of comprehensiveness and resoluteness in children's health would be strengthened. There is still a need to deepen knowledge about the meanings and feelings regarding their interpretations of the events suffered in childhood. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us (...) to argue the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. (shrink)

Methodological strategies for the identification and synthesis of ‘evidence’ to support decision‐making in relation to complex healthcare systems and practices This paper addresses the limitations of current methods supporting ‘evidence‐based health‐care’ in relation to complex aspects of care, including those questions that are best supported by descriptive or non‐empirical evidence. The paper identifies some new methods, which may be useful in aiding the synthesis of data in these areas. The methods detailed are broadly divided into those that facilitate the (...) identification of evidence and those that enable the interpretation of the data retrieved. To illustrate some of the issues involved, reference is made to a multimethod review recently completed by the authors, which aimed to identify factors that promote continuity in the transition from child to adult health and social care. It is argued that as healthcare organisations are becoming increasingly preoccupied with the evidence base of practice, such methods may help ensure that aspects of care and approaches that are outside the dominant pharmaco‐medical domain maintain a prominent position on the healthcare agenda while remaining open to external scrutiny. Healthcare professionals who use such approaches need to know their relative utility and benefits to inform clinical decisions, so as to ensure that best practice is observed. (shrink)

The international community has proposed a comprehensive strategy to prevent congenital abnormalities. And China, with a high incidence of congenital diseases, has implemented measures including prenatal screening and diagnosis to reduce the morbidity of congenital abnormalities. However, ethical challenges arise in the practice of prenatal screening and diagnosis among healthcare professionals. Five focus group discussions were conducted with twenty-four health professionals working in maternal and child health services in Hunan Province, China, to explore the ethical challenges they encountered (...) in prenatal testing decision-making and information disclosure practices, as well as their views on these challenges. Participants were selected through purposive sampling, ensuring maximum demographic diversity. Three main themes were identified: 1) balancing between information disclosure and privacy protection; 2) patient-oriented decision-making and tensions within family-oriented decision-making; 3) the disparity between the limited help clinical ethics committees (CECs) can provide and professionals’ need for CECs. Ethical norms for information disclosure and autonomous decision-making within prenatal screening and diagnostic institutions must be established. Utilizing CECs is crucial to guide professionals in delivering prenatal testing services while simultaneously focusing on targeted improvement of communication skills among these professionals. (shrink)

Multiple groups, including the National Bioethics Advisory Commission, the American Society of Clinical Oncology, the National Coalition of Comprehensive Cancer Centers, Workgroup 6 of the Summit Series on Cancer, PRIM&R, the Bell Report, and prominent ethicists have called for replacing the current system of local institutional review with central review for multisite national trials. We argue that this need is particularly acute in pediatric oncology, as shown by the experience of the Children's Oncology Group.

Research ethics is always important. However, it is especially crucial with sensitive research topics such as family violence. The aim of this article is to describe and discuss some crucial issues regarding intimate partner violence and child maltreatment, based on the authors’ own research experiences. We focus on and discuss examples concerning the definition of family violence, research design, ethical approval, participant recruitment and safety and data collection and processing. During the research process, the significance of teamwork is emphasized. (...) Support provided by the participants to each other and support given by experienced researchers within the team is very important for high ethical standards. (shrink)

Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, (...) of morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

A lot of people owe kind words to Tom Murray. Not because they hurt his feelings, or because he is easily the nicest guy in bioethics. The debt stems from the palpable silence that accompanied the release of Murray's trenchant and beautiful book, TheWorthofaChild. Somehow, in the shuffle to write and rewrite books about cloning and octuplets and $50,000 eggs, Murray's astonishingly comprehensive treatment of the meaning of the parent–child relationship passed undetected across the radar screens of virtually everyone (...) who writes about reproduction and genetics. In the year since I read TheWorthofaChild, I have paused dozens of times while reading or listening to scholars lament the dearth of careful work on the changing nature of baby-making. Each time this happens I grow more surprised that Murray's Child, which is handsomely bound, well-indexed, and published in the best style by University of California Press, isn't mentioned. This review is one scholar's attempt to right the balance. TheWorthofaChild by Thomas Murray is the most rigorous, most even-handed, and most comprehensive book ever written about the ethical issues associated with making a baby. It is also a very good read, a sensitive and moving portrayal of the struggle to be good at making and raising a child. (shrink)

The crisis in donor organ and tissue supply is one of the most difficult challenges for transplant today. New policy initiatives, such as the driver's license option and requiredrequest, have been implemented in many states, with other initiatives, such as mandatedchoice and presumedconsent, proposed in the hopes of ameliorating this crisis. At the same time, traditional acquisition of organs from human cadavers has been augmented by living human donors, and nonheartbeating human donors, as well as experimental animal and artificial sources. (...) Despite these efforts, the crisis persists and is perhaps most tragic when it threatens the lives of children, driving parents to sometimes desperate measures. Herein, we address one very controversial step some parents have taken to obtain matching tissue or organs for their needy children—that is, having a child, in part, for the purpose of organ or tissue procurement. (shrink)

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. From (...) this, the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood. (shrink)

The overall goal of clinical ethics consultation is to “improve the quality of healthcare outcomes” (ASBH 2011, 3). I find this focus helps me avoid people pleasing, system allegiance, being swayed...

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as (...) follows: thepotentiality principle, whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

At 41 weeks, the patient had been delivered by Cesarean section for failure to progress at Hospital A in the same city. Three days after birth she suffered a respiratory arrest. Resuscitation and ventilator support were initiated promptly but the child did poorly, and shortly after this first arrest, the parents were told by the child's physician that she had no chance of recovery. Nevertheless, the mother continued to insist that the child be kept on a respirator (...) and aggressive support be maintained. (shrink)

The process of research is often lengthy and can be extremely arduous. It may take many years to proceed from the initial development of an idea through to the comparison of the new modalities against a current gold-standard practice. Each step along the way involves rigorous scientific review, where protocols are scrutinized by multiple scientists not only in the specific field at hand but related fields as well. In addition to scientific review, most countries require a further review by a (...) panel that will specifically address the ethics of the proposed research. In Canada, those panels are referred to as Research Ethics Boards (REB), with the United States counterparts known as Institutional Review Boards (IRB). (shrink)

Two of the most poignant decisions in pediatrics concern disagreements between physicians and families over imperiled newborns. When can the family demand more life-sustaining treatment than physicians want to provide? When can it properly ask for less? The author looks at these questions from the point of view of decision theory, and first argues that insofar as the family acts in the child’s best interest, its choices cannot be constrained, and that the maximax and minimax strategies are equally in (...) the child’s best interest. He then proposes a guideline according to which the family can demand LST if it is physiologically possible to preserve a life the child can be expected to welcome, and refuse such treatment if it causes suffering that is “more than can be borne” even if an uncompromised life is expected to emerge. (shrink)