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)

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)

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)

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)

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)

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 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.

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)

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)

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)

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)

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)

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)

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 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)

This paper offers some comments on bioethical debates about resource allocation in healthcare. It is stimulated by Rosalind McDougall’s argument that it is an affront to the human dignity of people with below “liberties-level” health to fund human reproductive cloning. McDougall is right to underline the relevance of resource prioritisation to the ethics of research and provision of new biomedical technologies. This paper argues that bioethicists should be careful when offering comments about such issues. In particular, it (...) emphasises the need to represent accurately the reality of the situation—especially when we are passing judgement on technologies that are in their infancy and whose practical application is yet to be confirmed. The paper also emphasises the importance of the actual context to bioethical debate, and note that it would be better to talk about resource expenditure rather than resource allocation when it comes to discussing the rights and wrongs of how money is spent. It also reiterates the claims made by other writers that social and political philosophy need to have a transparent and considered role in debates about resources. (shrink)

The recent interest in systematic review methods in bioethics has highlighted the need for greater transparency in all literature review processes undertaken in bioethics projects. In this article, I articulate features of a good bioethics literature review that does not aim to be systematic, but rather to capture and analyse the key ideas relevant to a research question. I call this a critical interpretive literature review. I begin by sketching and comparing three different types of literature review conducted in bioethics (...) scholarship. Then, drawing on Dixon-Wood's concept of critical interpretive synthesis, I put forward six features of a good critical interpretive literature review in bioethics: answering a research question, capturing the key ideas relevant to the research question, analysing the literature as a whole, generating theory, not excluding papers based on rigid quality assessment criteria, and reporting the search strategy. (shrink)

BackgroundIn June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.Main textIn this paper, we analyse the ethical relationship between legislative “safeguards” and equal access. Drawing primarily on Ruger’s model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, (...) patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.ConclusionsWhile safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access. (shrink)

In this paper I explore the potential of virtue ethical ideas to generate a new way of thinking about the ethical questions surrounding the creation of children. Applying ideas from neo-Aristotelian virtue ethics to the parental sphere specifically, I develop a framework for the moral assessment of reproductive actions that centres on the concept of parental virtue. I suggest that the character traits of the good parent can be used as a basis for determining the moral permissibility of a particular (...) reproductive action. I posit three parental virtues and argue that we can see the moral status of a reproductive action as determined by the relationship between such an action and (at least) these virtues. Using a case involving selection for deafness, I argue that thinking in terms of the question ‘would a virtuous parent do this?’ when morally assessing reproductive action is a viable and useful way of thinking about issues in reproductive ethics. (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)

This paper argues that doctors' ethical challenges can be usefully conceptualised as role virtue conflicts. The hospital environment requires doctors to be simultaneously good doctors, good team members, good learners and good employees. I articulate a possible set of role virtues for each of these four roles, as a basis for a virtue ethics approach to analysing doctors' ethical challenges. Using one junior doctor's story, I argue that understanding doctors' ethical challenges as role virtue conflicts enables recognition of important moral (...) considerations that are overlooked by other approaches to ethical analysis. (shrink)

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child’s (...) medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being. (shrink)

In the Australian state of Victoria, legislation allowing voluntary assisted dying (VAD) passed through parliament in November 2017. There was then an eighteen-month period before the start date for patient access to VAD, referred to as the “implementation period.” The implementation period was intended to allow time for the relevant government department and affected organizations to develop processes before the Act came into effect in June 2019. This qualitative interview study investigates the perspectives of a multidisciplinary sample of twelve clinicians (...) from a single metropolitan hospital during this implementation period. Maximum variation sampling was utilized to ensure breadth across discipline (medical, nursing, allied health), speciality, and stated level of support for the VAD legislation. Four key themes were identified from the interview data: preparing for the unknown, ethical diversity within the organization, building a respectful culture, and concerns about the inability of the legislated approach to capture clinical nuances. Overall, these clinicians’ workplace experiences during the implementation period were shaped by the ethical diversity within their organization and a sense of uncertainty about how the VAD legislation would integrate with the practical realities of their clinical setting. The concept of “ethical diversity” could be a useful one for supporting staff in an organization during a VAD implementation period. (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)

Bioethics, Volume 35, Issue 7, Page 696-703, September 2021.

Given advances in the science of fertility preservation and the link between fertility choices and wellbeing, it is time to reframe our ethical thinking around fertility preservation procedures for children and young people with cancer. The current framing of fertility preservation as a possible offer may no longer be universally appropriate. There is an increasingly pressing need to discuss the ethics of failing to preserve fertility, particularly for patient groups for whom established techniques exist. I argue that the starting point (...) for deliberating about a particular patient should be a rebuttable presumption that fertility preservation ought to be attempted. Consideration of the harms applicable to that specific patient may then override this presumption. I outline the benefits of attempting fertility preservation; these justify a presumption in favour of the treatment. I then discuss the potential harms associated with fertility preservation procedures, which may justify failing to attempt fertility preservation in an individual patient's particular case. Moving from a framework of offer to one of rebuttable presumption in favour of fertility preservation would have significant implications for medical practice, healthcare organizations and the state. (shrink)

The idea that an individual has a ‘right not to know’ genetic information about himself or herself is entrenched in both the policy sphere and the genetic counselling ethos. In this paper, I interrogate this idea of a ‘right not to know’, questioning particularly its status as a right. I identify the conception of rights that seems to underlie the posited ‘right not to know’ as a conception of rights in which they are prioritised non-outweighable interests. Turning to a series (...) of hypothetical situations in which the ‘right not to know’ is invoked, I argue that the ‘right not to know’ is not a right consistent with such a conception. The ‘right not to know’ can only exist in a framework of rights in which they lack significant moral weight. Thus, considering the gravity of rights in popular understanding, I suggest caution in the continuing use of the phrase ‘right not to know’ in the context of genetic testing. This investigation suggests that structuring the debate around genetic ignorance in terms of the ‘right not to know’ is not conducive to moving forward ethical thinking in this area. (shrink)

In pediatric health care, parents and clinicians sometimes have competing ideas of what should be done for a child. In this article, we explore the idea that notions of what should be done for a child partly depend on one's perception of one's role in the child's life and care. Although role‐based appeals are common in health care, role‐differentiated approaches to understanding parent‐clinician conflicts are underexplored in the pediatric bioethics literature. We argue that, while the parental role is recognized as (...) having social content or value, and sometimes legal force, it is not always recognized as having ethical content or value, as the clinician's role is. We draw together key insights from the normative and empirical literature on parental roles to show how a role‐based lens might inform clinicians’ and clinical ethicists’ approach to cases in which parents and clinicians disagree. (shrink)

In this paper, we explore the ethics of restricting visitation to hospitals during an infectious disease outbreak. We aim to answer three questions: What are the features of an ethically justified hospital visitor restriction policy? Should policies include scope for case‐by‐case exemptions? How should decisions about exemptions be made? Based on a critical interpretive review of the existing ethical literature on visitor restrictions, we argue that an ethically justified hospital visitor restriction policy has the following features: proportionality, comprehensiveness, harm mitigation, (...) exemptions for specific patient populations, visitation decisions made separately from a patient's treating clinicians, transparency, and consistency in application. We also argue that an ethical policy ought to include scope for case‐by‐case exemptions for individual patients. We propose a process for ethical decision‐making that provides a shared language and structure to decrease the risks and burdens of decision‐making when clinicians or managers are considering requests for exemptions. (shrink)

As assisted reproductive technologies become increasingly popular, debate has intensified over the ethical justification for restricting access to ART based on various medical and non-medical factors. In 2010, the Australian state of Victoria enacted world-first legislation that denies access to ART for all patients with certain criminal or child protection histories. Patients and their partners are identified via a compulsory police and child protection check prior to commencing ART and, if found to have a previous relevant conviction or child protection (...) order, are given a “presumption against treatment.” This article reviews the legislation and identifies arguments that may be used to justify restricting access to ART for various reasons. The arguments reviewed include limitations of reproductive rights, inheriting undesirable genetic traits, distributive justice, and the welfare of the future child. We show that none of these arguments justifies restricting access to ART in the context of past criminal history. We show that a “presumption against treatment” is an unjustified infringement on reproductive freedom and that it creates various inconsistencies in current social, medical, and legal policy. We argue that a state-enforced policy of restricting access to ART based on the non-medical factor of past criminal history is an example of unjust discrimination and cannot be ethically justified, with one important exception: in cases where ART treatment may be considered futile on the basis that the parents are not expected to raise the resulting child. (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)

In this paper, I present an ethical analysis of the case of an elderly woman with dementia, Mrs S. The hospital treating Mrs S sought to cease her dialysis treatment despite Mrs S’s family’s protestations that continuing the treatment was in her best interests. Assuming Brock’s framework as a theoretical background, I consider the case in terms of three questions. Firstly, was ‘best interests ’ the appropriate basis for deciding on a course of action in this situation? Secondly, assuming the (...) appropriateness of a best interests principle, was it in Mrs S’s best interests for the dialysis treatment to be withdrawn as the hospital suggested? And thirdly, if it was in Mrs S’s best interests for dialysis to be withdrawn, was the hospital right to pursue this course of action in light of the family’s disagreement? Based on the changes to the patient’s ‘self ’ associated with dementia, I argue that a best interests principle was appropriate, that continuing dialysis was not in Mrs S’s best interests, and that the hospital should have pursued cessation of treatment even in light of the family’s contrary wishes. (shrink)

Background: The Voluntary Assisted Dying Act 2017 passed into law in Victoria, Australia, on the 29 November 2017. Internationally, nurses have been shown to be intimately involved in patient care throughout the voluntary assisted dying process. However, there is a paucity of research exploring Australian nurses’ perspectives on voluntary assisted dying and, in particular, how Victorian nurses anticipate the implementation of this ethically controversial legislation will impact their professional lives. Objectives: To explore Victorian nurses’ expectations of the ethical and practical (...) impacts the voluntary assisted dying legislation will have on their professional lives. Research design: This qualitative study analysed nurses’ free text responses collected as part of a larger mixed methods online survey investigating staff views on the Voluntary Assisted Dying Act. Data were collected during the period between the passing of the voluntary assisted dying legislation and the start date and were analysed using inductive content analysis. Participants and research context: Free text survey responses were analysed from 1873 nurses employed across seven Victorian health services located in both metropolitan and regional areas of the state. Ethical considerations: The study obtained research ethics approval and all participants were informed of the voluntary and anonymous nature of their participation. Findings: This study identified three broad areas of Victorian nurses’ professional lives that they expected to be impacted by the implementation of voluntary assisted dying: professional identity, career development and workplace relationships. Conclusion: Participants anticipate diverse and nursing-specific impacts of the implementation of voluntary assisted dying in Victoria. Their insights can inform health services in jurisdictions considering or already implementing voluntary assisted dying, to develop policies, procedures and staff training programmes that safeguard the well-being and legal rights of their nursing staff. (shrink)