Background No previous study has provided evidence for the scope and frequency of ethical dilemmas for paediatric nurses. It is essential to understand this to optimise patient care and tailor ethics support for nurses. Research aim The aim of this study was to explore the scope of nurses’ ethical dilemmas in a paediatric hospital and their engagement with the hospital clinical ethics service. Research design This study used a cross-sectional survey design. Participants and research context Paediatric nursing staff in a (...) tertiary paediatric centre in Australia completed an online survey asking about their exposure to a range of ethical dilemmas and their knowledge of the clinical ethics service. Analysis used descriptive and inferential statistics. Ethical considerations Ethical approval was granted from the hospital research committee. The survey was anonymous, and no identifying details of participants were collected. Results Paediatric nurses experienced a wide range of ethical dilemmas frequently, both in the intensive care and general areas. Knowledge and use of the clinical ethics service was poor and the most frequent challenge for nurses in managing dilemmas was feeling powerless. Conclusion There is a need to recognise the moral burden of ethical dilemmas for paediatric nurses in order to foster ethical sensitivity, and to provide adequate support to improve care and mitigate nursing moral distress. (shrink)

Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate it...

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)

In this paper, we put forward the view that emotions have a legitimate and important role in health professional ethics education. This paper draws upon our experience of running a narrative ethics education programme for ethics educators from a range of healthcare disciplines. It describes the way in which emotions may be elicited in narrative ethics teaching and considers the appropriate role of emotions in ethics education for health professionals. We argue there is a need for a pedagogical framework to (...) productively incorporate the role of emotions in health professional ethics teaching. We suggest a theoretical basis for an ethics pedagogy that integrates health professional emotions in both the experience and the analysis of ethical practice, and identify a range of strategies to support the educator to incorporate emotion within their ethics teaching. (shrink)

Two versions of the argument that prenatal diagnosis discriminates against the disabled are distinguished and analysed. Both are shown to be inadequate, but some valid concerns about the social effects of prenatal diagnosis are highlighted.

Bioethics, Volume 36, Issue 7, Page 765-773, September 2022.

In theory, HREC members should use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans as the basis for their decisions, and researchers should design their research in accordance with these guidelines However, very little is known about what researchers and HREC members actually do in practice. In this paper, we report some of the key findings of the study “Human Research Ethics in Practice”, a qualitative interview-based study of health researchers and HREC members (...) in Victoria. The findings shed light on how researchers and HREC members conceptualise ethics, how they use the National Statement, and what deliberative strategies they employ to assess the ethical appropriateness of research studies. The findings also reveal differences and similarities between health researchers’ and HREC members’ perceptions of the roles of HRECs, and point to some sources of misunderstanding and tension. We examine the implications of some of these findings for the ways in which HRECs carry out their task, and research institutions support and promote ethical conduct in research amongst their staff and students. The focus of this study is on health research, but we suggest that the findings are highly relevant to all other research areas where human participants are involved. (shrink)

In the debate over fetal tissue use, an analogy is often drawn between removing organs from the body of a person who has been murdered to use for transplantation, and collecting tissue from an aborted fetus to use for the same purpose. The murder victim analogy is taken by its proponents to show that even if abortion is the moral equivalent of murder, there is still no good reason to refrain from using the fetal tissue, since as a society we (...) do not see any problem about using organs from murder victims. However, I argue that the analogy between murder victims and aborted fetuses does not hold -- the two situations are not the same in all morally relevant respects. Thus the murder victim analogy does not provide an argument in favour of fetal tissue transplant. In conclusion, I point to some of the potential pitfalls of using analogies in ethical argument. (shrink)

The idea of “postponed withholding,” proposed by Syltern et al. (2022), is a provocative one, and like all good provocative ideas, provokes deeper thinking from fresh perspectives. Our attention wa...

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

In this paper, we discuss and critically evaluate the National Health and Medical Research Council’s recently released document entitled ‘Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research’. We provide a brief account of its development, philosophy and contents, and then consider how the document could be used by HRECs. We recommend that three specially targeted documents be developed from this one document, to meet the particular needs of HRECs, Indigenous people and researchers. We propose a system (...) of Indigenous ethics advisers as a way to implement the central ideas of the new draft guidelines, without falling into the legalism and rule-following that these guidelines explicitly aim to avoid. (shrink)

In the last century, science fiction has become an incredibly powerful tool in depicting alternative social imaginaries, particularly those of the future. Extending beyond their fictious nature is a commentary on the stark realities of modern society. The ‘cyberpunk’ subgenre, for example, offers a dystopian critique on the dangers of technological dependence and hypercapitalism. In studying science fiction, future imaginaries can be developed as utopian goals for governance systems to strive for. In contrast to cyberpunk, the subgenre of ‘solarpunk’ depicts (...) a utopian society where humanity lives locally, sustainably, and in harmony with nature. This paper deconstructs solarpunk media to describe three guiding principles of solarpunk: anarchism, ecology, and justice. As an anarchist community, solarpunk strives for a post-scarcity, post-capitalist society devoid of hierarchy and domination. As an ecological community, solarpunk strives for local, self-sufficient, and sustainable living where both the human and non-human flourish. Finally, as a just community, solarpunk strives to rid society of marginalization and celebrate authenticity. These three principles can be used to guide humanity towards a utopian, solarpunk future. (shrink)

Clinical genetic research is often regarded as more ethically problematic than other forms of research, and in some countries is subject to specific regulation, requiring researchers to follow specialised guidelines. In this paper, an approach to enhancing the ethical conduct of genetic research is proposed, which is believed to be more effective than simply attempting to follow general guidelines. The potential concerns, likely areas of misunderstanding and negative reactions of the participant group are systematically investigated before starting a study on (...) genetics. This would constitute, in effect, an ethical pilot study, similar to a feasibility pilot study to test equipment, procedures and logistics. The findings of the ethical pilot study would be used to help in designing ethically important aspects of research protocol, such as recruitment procedures, written and other information for potential participants, informed consent processes and reporting of results including ambiguous or uncertain results. (shrink)

In this paper, I question the common assumption that the workings of Human Research Ethics Committees should be treated as confidential This is actually quite a complex issue, since there are many stages in the ethics approval process, and a number of different stakeholders who might wish to claim access, or restrict access, to different sorts of information. Here I consider just one aspect — whether ethics committee members should be free to reveal in public the details of what occurs (...) in their meetings. My approach is two-fold: first a negative argument that confidentiality does not apply to ethics committee deliberations, and then a positive argument that there is an important public good, namely accountability, to be served by making these deliberations open to the public. (shrink)

In this paper, I consider the question of whether there is such a thing as ‘expertise in research ethics’. I discuss first the issue of expertise in ethics more generally. There is quite a lot of resistance to the idea that there are ethics experts, for reasons which I will raise and respond to. I outline two different views of what might be counted as expertise in ethics, and argue that only one of these is defensible. But the defensible view (...) is also a useful view. Ethics expertise in this sense does exist. It is a set of generic analytic skills and knowledge of ideas and logical processes. Expertise in research ethics is a particular type of ethics expertise, and I give a brief account of what it includes, and how it differs from ethics expertise in general. I end with the suggestion that people with such expertise would be useful members of Human Research Ethics Committees, and steps ought to be taken to increase the likelihood that they become members. This may or may involve adding the category of ‘ethicist’ to the list of HREC membership categories. (shrink)

This chapter contains sections titled: Trends in Ethics Teaching in the Health Professions Theoretical Questions Underlying Curriculum Content Ethical Knowledge or Ethical Behavior? The Hidden Curriculum Conclusion References.

One common objection to fetal tissue transplantation (FTT) is that, if it were to become a standard form of treatment, it would encourage or entrench the practice of abortion. This claim is at least factually plausible, although it cannot be definitively established. However, even if true, it does not constitute a compelling ethical argument against FTT. The harm allegedly brought about by FTT, when assessed by widely accepted non-consequentialist criteria, has limited moral significance. Even if FTT would cause more abortions (...) to be performed, and abortion is taken to be a serious moral wrong, this is not sufficient in itself to make FTT wrong. (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)

The distribution of scarce healthcare resources is an increasingly important issue due to factors such as expensive ‘high tech’ medicine, longer life expectancies and the rising prevalence of chronic illness. Furthermore, in the current healthcare context lifestyle-related factors such as high blood pressure, tobacco use and obesity are believed to contribute significantly to the global burden of disease. As such, this paper focuses on an ongoing debate in the academic literature regarding the role of responsibility for illness in healthcare resource (...) allocation: should patients with self-caused illness receive lower priority in access to healthcare resources? This paper critically describes the lower priority debate's 12 key arguments and maps out their relationships. This analysis reveals that most arguments have been refuted and that the debate has stalled and remains unresolved. In conclusion, we suggest progression could be achieved by inviting multidisciplinary input from a range of stakeholders for the development of evidence-based critical evaluations of existing arguments and the development of novel arguments, including the outstanding rebuttals. (shrink)

When healthcare professionals feel constrained from acting in a patient’s best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be “constrained” in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. (...) Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration. (shrink)

In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause was introduced requiring doctors with a conscientious objection to abortion to refer women to another provid...

The COVID-19 pandemic has highlighted the risks that can be involved in healthcare work. In this paper, we explore the issue of staff safety in clinical work using the example of personal protective equipment in the COVID-19 crisis. We articulate some of the specific ethical challenges around PPE currently being faced by front-line clinicians, and develop an approach to staff safety that involves balancing duty to care and personal well-being. We describe each of these values, and present a decision-making framework (...) that integrates the two. The aim of the framework is to guide the process of balancing these two values when staff safety is at stake, by facilitating ethical reflection and/or decision-making that is systematic, specific and transparent. It provides a structure for individual reflection, collaborative staff discussion, and decision-making by those responsible for teams, departments and other groups of healthcare staff. Overall the framework guides the decision maker to characterise the degree of risk to staff, articulate feasible options for staff protection in that specific setting and identify the option that ensures any decrease in patient care is proportionate to the increase in staff well-being. It applies specifically to issues of PPE in COVID-19, and also has potential to assist decision makers in other situations involving protection of healthcare staff. There are no data in this work. (shrink)

Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was (...) employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed. (shrink)

Models for clinical ethics case consultation often make reference to ‘balancing’ or ‘weighing’ moral considerations, without further detail. In this paper, we investigate balancing in clinical ethics case consultation. We suggest that, while clinical ethics services cannot resolve ongoing deep philosophical debates about the nature of ethical reasoning, clinical ethicists can and should be more systematic and transparent when balancing considerations in case consultations. We conceptualise balancing on a spectrum from intuitive to deliberative, and argue that good balancing in case (...) consultation involves articulating reasons for giving something more or less weight. We develop a framework of four practical strategies for better balancing in clinical ethics case consultation: intuitions as a launchpad, drilling down, pairwise comparison and group deliberation. (shrink)

Hospitals are places where patients are unwell, where patients and their families may be upset, confused, frustrated, in pain, and vulnerable. The likelihood of these experiences and emotions manifesting in anger and aggressive behaviour is high. In this paper, we describe the involvement of a clinical ethics service responding to a request to discuss family aggression within a rehabilitation department in a large paediatric hospital in Australia. We suggest two key advantages of involving a clinical ethics service in discussions about (...) how to respond to family aggression. First, the process of ethics deliberation provides an opportunity for clinicians to be involved in the solution by articulating their perspectives, tolerance levels, and general concerns about the effects of family aggression towards staff. Second, supporting clinicians to articulate and identify the impact of parental aggression directly counters the disadvantages of the more blunt zero-tolerance policy response, which is necessarily imposed from the top down. (shrink)

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

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ that research participants may have. In this paper, we describe a new concept—therapeutic appropriation. Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' (...) clinical care, while simultaneously acknowledging the generalised research aims. To illustrate the concept of therapeutic appropriation, we draw on data from an interview study which we conducted to investigate the experiences of patients and general practitioners involved in clinical trials in primary care. We argue that therapeutic appropriation has two key elements: comprehension that the research project is not necessarily aiming to benefit participants and the deliberate use of incidental features of the research for personal therapeutic benefit of various kinds. We conclude that therapeutic appropriation is a useful concept that refines understanding of potential ethical problems in clinical research, and points to strategies to address them. (shrink)

Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery will (...) fail in its aims. In this article, we challenge, in an evidence-based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion. (shrink)