The articles in this issue explore a number of difficult choices in medical care and research. They investigate ethical complexity in a range of decisions faced by policymakers and clinicians, and offer new evidence or normative approaches for navigating this complexity. In this issue’s feature article, Ford and colleagues engage with an ethical challenge faced by policymakers in relation to health research: should free text data contained in medical records be shared for research purposes?1 While some types of data from (...) electronic medical records are used widely in health research, privacy concerns have limited the use of free text data specifically. Ford and colleagues highlight the richness of the clinical information in free text and its centrality to some areas of healthcare such as mental health and primary care. In their view, while text analytic technology is developing rapidly, ‘policy makers routinely judge that the risk of re-identifying patients from text data is too high for these data uses’. Their citizens’ jury study in the UK found that participants were largely in favour of medical free text data being shared outside the NHS for research using an opt-out model: ‘the majority of jurors believed the benefits of sharing data for research outweighed the privacy risks’. In their commentary on this research, Largent and Morain raise some important issues about policymakers’ use of empirical findings …. (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)

Artificial intelligence is increasingly being developed for use in medicine, including for diagnosis and in treatment decision making. The use of AI in medical treatment raises many ethical issues that are yet to be explored in depth by bioethicists. In this paper, I focus specifically on the relationship between the ethical ideal of shared decision making and AI systems that generate treatment recommendations, using the example of IBM’s Watson for Oncology. I argue that use of this type of system creates (...) both important risks and significant opportunities for promoting shared decision making. If value judgements are fixed and covert in AI systems, then we risk a shift back to more paternalistic medical care. However, if designed and used in an ethically informed way, AI could offer a potentially powerful way of supporting shared decision making. It could be used to incorporate explicit value reflection, promoting patient autonomy. In the context of medical treatment, we need value-flexible AI that can both respond to the values and treatment goals of individual patients and support clinicians to engage in shared decision making. (shrink)

In jurisdictions where voluntary assisted dying is legal, eligibility assessments, prescription and administration of a VAD substance are commonly performed by senior doctors. Junior doctors’ involvement is limited to a range of more peripheral aspects of patient care relating to VAD. In the Australian state of Victoria, where VAD has been legal since June 2019, all health professionals have a right under the legislation to conscientiously object to involvement in the VAD process, including provision of information about VAD. While this (...) protection appears categorical and straightforward, conscientious objection to VAD-related care is ethically complex for junior doctors for reasons that are specific to this group of clinicians. For junior doctors wishing to exercise a conscientious objection to VAD, their dependence on their senior colleagues for career progression creates unique risks and burdens. In a context where senior colleagues are supportive of VAD, the junior doctor’s subordinate position in the medical hierarchy exposes them to potential significant harms: compromising their moral integrity by participating, or compromising their career progression by objecting. In jurisdictions intending to provide all health professionals with meaningful conscientious objection protection in relation to VAD, strong specific support for junior doctors is needed through local institutional policies and culture. There are no data in this work. (shrink)

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)

Birchley9s critique of the harm threshold for overriding parental decisions is successful in demonstrating that the harm threshold, like the best interests standard, suffers from the problem of indeterminacy. However, his focus on critiquing empirical rather than normative arguments for the harm threshold means that his broad conclusion that it is ‘ill-judged’ is not justified. Advocates of the harm threshold can accept that the concept of harm to a child is indeterminate, yet still invoke strong normative arguments for this way (...) of responding to parental decisions that conflict with medical recommendations. I suggest that Birchley9s discussion, rather than showing that the harm threshold is mistaken, instead highlights the importance of developing a comprehensive account of children9s interests, for proponents of a best interests approach and for advocates of the harm threshold. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

In their analysis of the eligibility criteria for assisted dying in Canada, Downie and Schuklenk put forward a strong argument for the ethical defensibility of including mental illnesses and disabilities as underlying conditions driving a person’s request for assisted dying.1 In this commentary, we add a view on these debates from our home state of Victoria, Australia, where voluntary assisted dying has been legal since June 2019. We highlight the more conservative approach to eligibility in our setting compared with Canada, (...) and argue for debates about eligibility criteria to be conceptualised as part of a broader discussion about access to assisted dying that includes clinicians’ roles and perspectives. In our view, clinicians’ perspectives may have a significant impact on individuals’ ability to access assisted dying, regardless of legislative or other changes made to any system. ‘Voluntary assisted dying’ is the terminology used in our context, rather than Medical Assistance in Dying, so we will use that term when referring to the Victorian system. There are several key differences between the Canadian and Victorian approaches that are important in relation to the debates addressed by Downie and Schuklenk. First, the emphasis in Victoria is on patient self-administration of the VAD …. (shrink)

Moen targets a view about the intrinsic harmfulness of prostitution that he sees as widespread in healthcare, academia and public policy.1 He argues that the exchange of sex for money is not intrinsically harmful by systematically rejecting various possible proposed harms. He further suggests that it is the social context of discriminating laws and stigma that accounts for the harms experienced by prostitutes, rather than any intrinsic feature of exchanging sex for money.One striking aspect of his argument is the particular (...) way in which he characterises the common view about the harmfulness of prostitution. Consider the following two possible versions of the claim that prostitution is harmful: "The intrinsic claim: The exchange of sex for money is intrinsically harmful to the seller." "The contingent claim: Prostitutes are currently likely to experience significant harm."The intrinsic claim is …. (shrink)

In contrast to Di Nucci’s characterisation, my argument is not a technoapocalyptic one. The view I put forward is that systems like IBM’s Watson for Oncology create both risks and opportunities from the perspective of shared decision-making. In this response, I address the issues that Di Nucci raises and highlight the importance of bioethicists engaging critically with these developing technologies.

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

The articles in this issue direct our attention to the role of concepts in medical ethics. The issue includes research that defines a concept,1 research that applies concepts to illuminate the moral aspects of various elements of medicine,2 3 and research investigating the appropriate set of concepts to teach medical students.4 In their in-depth exploration of the concept of disease in this issue, Powell and Scarffe argue that our understanding of a concept should be ‘tailored to the role that the (...) concept plays in the institutional settings in which it is deployed’.1 Their methodology takes seriously the institutional context in which a concept operates. This approach to thinking about concepts is potentially applicable very broadly in medical ethics. What is the institutional role that a concept plays? What is the work that we need the concept to do? The feature article by Powell and Scarffe proposes a new definition of a foundational concept in medicine, that of disease. On their view, ‘a biomedical state is a disease only if it implicates a biological dysfunction that is, or would be, properly disvalued’.1 They describe their definition as involving both a moral criterion and a biological criterion. A number of commentators engage with Powell and Scarffe’s proposal. Tekin focuses on the moral criterion, through the example of grief and depression. …. (shrink)

In their essay arguing for ethical review of social research, Sheehan et al write: > Inquiry and human life are intertwined and interdependent. To be human is to be curious, to ask questions about yourself, the world, and your place in the world. This process of inquiry is undertaken individually, but is a social activity.1 As researchers in medical ethics, all the authors in this issue have chosen to ask a particular type of question about the world: questions about ethical (...) complexity and justification. Their inquiries are rich and diverse. We can see each as an individual piece of scholarship, contributing to our knowledge of a specific topic. But we can also see medical ethics as a social activity—one undertaken by a community of authors and readers, debating and reasoning together. What is striking when we think of medical ethics in this second way is the diversity of approaches to research that are useful in our discussions. Understanding ethics in healthcare is furthered by very different types of research, and this issue of the journal clearly illustrates this breadth of approaches to scholarship in medical ethics. The three articles on transplant ethics provide an excellent example of this diversity of scholarship in medical ethics. All explore ethical aspects of transplantation but using different approaches. Ladin and colleagues2 identify an ethical problem through empirical inquiry. Their research examines the requirement that a patient have adequate social support in …. (shrink)

We report an experiment investigating the “special-process” theory of insight problem solving, which claims that insight arises from non-conscious, non-reportable processes that enable problem re-structuring. We predicted that reducing opportunities for speech-based processing during insight problem solving should permit special processes to function more effectively and gain conscious awareness, thereby facilitating insight. We distracted speech-based processing by using either articulatory suppression or irrelevant speech, with findings for these conditions supporting the predicted insight facilitation effect relative to silent working or thinking (...) aloud. The latter condition was included to investigate the currently contested effect of “verbal overshadowing” on insight, whereby thinking aloud is claimed to hinder the operation of special, non-reportable processes. Whilst verbal overshadowing was not evident in final solution rates, there was nevertheless support for verbal overshadowing up to and beyond.. (shrink)

The concept of “public participation” is currently one of great interest to researchers and policy makers. In response to a perceived need for greater public involvement in decision making and policy formation processes on the part of both policymakers and the general public, a variety of novel mechanisms have been developed, such as the consensus conference and citizens jury, to complement traditional mechanisms, such as the public meeting. However, the relative effectiveness of the various mechanisms is unclear, as efforts at (...) evaluation have been sparse. In this article, the authors describe an evaluation of a two-day “deliberative conference” on the topic of radiation dose assessment. The authors detail the evaluation framework that they adopt and describe the instruments that they have developed to determine the attainment of the evaluationcriteria stipulated in that framework. They then describe the participation exercise that they have evaluated. Finally, they apply the instruments to assess the effectiveness of the exercise, and discuss the results and their implications for the conduct of evaluations and the use of this particular participation mechanism. (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)

The COVID-19 pandemic will generate vexing ethical issues for the foreseeable future and many journals will be open to content that is relevant to our collective effort to meet this challenge. While the pandemic is clearly the critical issue of the moment, it’s important that other issues in medical ethics continue to be addressed as well. As can be seen in this issue, the Journal of Medical Ethics will uphold its commitment to publishing high quality papers on the full array (...) of medical ethics. At the same time, JME aims to be a premiere home for ground-breaking scholarship on the ethical issues raised by COVID-19. Toward this end, we have a number of papers that are freely available online and for which production has been fast-tracked.1–5 A challenge for authors who want to write about the pandemic is the rapidly evolving nature of the situation and the time it takes for journal content to be reviewed and published, even when fast-tracked. For that reason, all authors who would like to submit a paper on the pandemic can also submit a post to the JME blog prior to submitting a full paper to the journal. Those interested in writing for the JME blog should contact one of its editors, Hazem Zohny or Mike King. Over the last 3 weeks, 30 high-quality commentaries on the pandemic have been posted to the blog. These posts are circulated widely via the JME Twitter and Facebook feeds and have stimulated significant …. (shrink)

The role of imagery in encoding event-based prospective memories has yet to be fully clarified. Herein, it is argued that imagery augments a cue-to-context association that supports event-based prospective memory performance. By this account, imagery encoding not only improves prospective memory performance but also reduces interference to intention-related information that occurs outside of context. In the current study, when lure words occurred outside of the appropriate responding context, the use of imagery encoding strategies resulted in less interference when compared with (...) a standard event-based intention condition. This difference was eliminated when participants were not given a specific context to associate their intention . These results support a cue-to-context association account of how imagery operates in certain event-based prospective memory tasks. (shrink)

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; there are additional equity-based reasons to offer OPS to non-binary adults as a group; and the ethical defensibility (...) of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient’s request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual’s context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results. (shrink)

The pull to coordinate with other individuals is fundamental, serving as the basis for our social connectedness to others. Discussed is a dynamical and ecological perspective to joint action, an approach that embeds the individual’s mind in a body and the body in a niche, a physical and social environment. Research on uninstructed coordination of simple incidental rhythmic movement, along with research on goal‐directed, embodied cooperation, is reviewed. Finally, recent research is discussed that extends the coordination and cooperation studies, examining (...) how synchronizing with another, and how emergent social units of perceiving and acting are reflected in people’s feelings of connection to others. (shrink)

The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that (...) taking individual informed consent seriously involves understanding and addressing the influence of communities in which individuals’ lives are embedded; (ii) that individual participation can generate risks and benefits for communities as part of the wider implications of research. We further argue that the contingent nature of a community means that defining boundaries is generally a normative process itself, with ethical implications. Community engagement supports the enactment of normative roles; building mutual understanding and trust between researchers and community members have been important goals in Kilifi, requiring a broad range of approaches. Ethical dilemmas are continuously generated as part of these engagement activities, including the risks of perverse outcomes related to existing social relations in communities and conditions of ‘half knowing’ intrinsic to processes of developing new understandings. (shrink)

Key Concepts for Understanding Curriculum is an invaluable guide for all involved in curriculum matters. Originally published in 1992, and then re-released as two volumes, the third edition returns to a single volume and includes 21 key topics in the field. The topics comprise the latest trends and issues written in Marsh's clear and accessible style, and are an important source of material for an international readership at every level. The book is divided into six sections including: curriculum planning (...) and development; curriculum management; teaching perspectives; collaborative involvement in curriculum; and curriculum ideology. In this third edition many of the latest curriculum trends and issues are included such as standards-based frameworks, using technology in teaching and learning modes, standards based reforms, and politics of decision-making. (shrink)

Emergent scholarship on the most radical technological invention of our time confirms what most of us know from first-hand experience - that the internet has fundamentally altered our perceptions and our knowledge, as well as our sense of subjectivity, community and agency (see for example Vries, 2002: 19). The American scholar of religion and communications, Stephen O'Leary, one of the first scholars to analyze the role of the new media for religious communities, claims that the advent of the internet has (...) been as revolutionary for religious growth and dissemination as was the invention of the printing press (O'Leary, 1996). (shrink)

Proceedings of a conference held in the fall of 2005 at the University of Notre Dame.

The current research examined whether fair consideration—a social norm that people inherently prefer to confirm—would modulate face recognition. Each neutral face was associated with fair offers or unfair offers via an economic decision task, the Ultimatum Game (UG) task. After the UG, participants were asked to identify the faces of proposers who made different offers. Enhanced memory was observed for fair-related faces compared to unfair-related faces. Furthermore, high trait anxiety was associated with reduced memory for fair-related faces. These results were (...) further confirmed by signal detection theory. The current research provided initial evidence that people showed enhanced memory for faces that made fair offers from the economic decision task, and that high trait anxiety was associated with reduced fair-related memory. Possible neural mechanisms and the implication in economic and social situations have been discussed. (shrink)

In this paper, we will consider the neuro-cognitive systems involved in mediating morality. Five main claims will be made. First, that there are multiple, partially separable neuro-cognitive architectures that mediate specific aspects of morality: social convention, care-based morality, disgust-based morality and fairness/justice. Second, that all aspects of morality, including social convention, involve affect. Third, that the neural system particularly important for social convention, given its role in mediating anger and responding to angry expressions, is ventrolateral prefrontal cortex. Fourth, that the (...) neural systems particularly important for care-based morality are the amygdala and medial orbital frontal cortex. Fifth, that while Theory of Mind is not a prerequisite for the development of affect-based 'automatic moral attitudes', it is critically involved in many aspects of moral reasoning. (shrink)

This study examined people’s ability to predict and postdict their performance on an event-based prospective memory task. Using nonfocal cues, one group of participants predicted their success at finding animal words and a different group predicted their ability to find words with a particular syllable in it. The authors also administered a self-report questionnaire on everyday prospective and retrospective memory failures. Based on the different strategies adopted by the two groups and correlations among the dependent variables, the authors concluded that (...) people do have a basic awareness of their prospective memory abilities, but that this awareness is far from accurate. The importance of metamemory concerning one’s prospective memory is discussed in terms of how it influences the strategies that people might choose for actually completing their various everyday intentions. (shrink)

Activating the ERK pathway (extracellular signal‐regulated kinase pathway) has proven beneficial in several models of Huntington's disease (HD), and drugs that are protective in HD models have recently been found to activate ERK. Thus, the ERK cascade may be a potential target for therapeutic intervention in this currently untreatable disorder. HD is caused by an expanded polyglutamine repeat in the huntingtin (Htt) protein that actuates a diverse set of pathogenic mechanisms. In response to mutant Htt, ERK is activated and directs (...) a protective transcriptional response and inhibits caspase activation. Paradoxically, Htt also interferes with several signaling events of the ERK pathway. Mutant Htt compromises the ERK‐dependent transcriptional response to corticostriatal BDNF signaling. Mutant Htt also hinders glutamate uptake from the synaptic cleft by down‐regulating ERK‐dependent expression of glutamate transporters, leaving cells vulnerable to excitotoxicity. Some of this cellular complexity can be capitalized on to achieve selective activation of ERK, which can be protective. (shrink)

Neurodegenerative diseases are becoming increasingly common as life expectancy increases. Recent years have seen tremendous progress in the identification of genes that cause these diseases. While mutations have been found and cellular processes defined that are altered in the disease state, the identification of treatments and cures has proven more elusive. The process of finding drugs and therapies to treat human diseases can be slow, expensive and frustrating. Can model organisms such as Drosophila speed the process of finding cures and (...) treatments for human neurodegenerative diseases? We pose three questions, (1) can one mimic the essential features of human diseases in an organism like Drosophila, (2) can one cure a model organisms of human disease and (3) will these efforts accelerate the identification of useful therapies for testing in mice and ultimately humans? Here we focus on the use of Drosophila to identify potential treatments for neurodegenerative diseases such as Huntington's and we discuss how well these therapies translate into mammalian systems. BioEssays 26:485–496, 2004. © 2004 Wiley Periodicals, Inc. (shrink)