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)

There has recently been interest in applying the techniques of systematic review to bioethics literature. In this paper, I identify the three models of systematic review proposed to date in bioethics: systematic reviews of empirical bioethics research, systematic reviews of normative bioethics literature, and systematic reviews of reasons. I argue that all three types yield information useful to scholarship in bioethics, yet they also face significant challenges particularly in relation to terminology and time. Drawing on my recent experience conducting a (...) systematic review, I suggest that complete comprehensiveness may not always be an appropriate goal of a literature review in bioethics, depending on the research question. In some cases, all the relevant ideas may be captured without capturing all the relevant literature. I conclude that systematic reviews in bioethics have an important role to play alongside the traditional broadbrush approach to reviewing literature in bioethics. (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)

The Human Fertilisation and Embryology Authority’s recent restrictive recommendations on sex selection have highlighted the need for consideration of the plausibility of ethical arguments against sex selection. In this paper, the author suggests a parental virtues approach to some questions of reproductive ethics as a superior alternative to an exclusively harm focused approach such as the procreative liberty framework. The author formulates a virtue ethics argument against sex selection based on the idea that acceptance is a character trait of the (...) good parent. It is concluded that, because the argument presented posits a wrong in the sex selecting agent’s action that is not a harm, the argument could not function as a justification of the HFEA’s restrictive position in light of their explicit commitment to procreative liberty; it does, however, suggest that ethical approaches focused exclusively on harm fail to capture all the relevant moral considerations and thus that we should look beyond such approaches. (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)

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)

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 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.

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)

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)

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)

Undergraduate medical ethics education currently focuses on ethical concepts and reasoning. This paper uses an intern’s story of an ethically challenging situation to argue that this emphasis is problematic in terms of ensuring students’ ethical practice as junior doctors. The story suggests that it is aligning their actions with the values that they reflectively embrace that can present difficulties for junior doctors working in the pressures of the hospital environment, rather than reasoning to an ethically appropriate action. I argue that (...) junior doctors need skills for implementing their ethical decisions and that these ought to form a central component of undergraduate medical ethics education. (shrink)

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)

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)

There is increasing recognition among bioethicists that health-care practitioners' everyday ethical challenges ought to be the focus of ethical analysis. Interviews were conducted with Australian junior doctors to identify some of the kinds of situations that they found ethically challenging, as a basis for this type of grounded philosophical analysis and for further empirical research into junior doctors' ethical issues. Fourteen doctors in their first to fourth year of work from six hospitals in Melbourne participated. Issues discussed included involvement in (...) treatment perceived as inappropriate, seniors discouraging disclosure of errors, coping when requested help was not forthcoming, observing behaviour perceived as unethical, truth-telling and informed consent. The difficulties described often focused on interactions with colleagues and position in the health-care team. Although the results cannot be generalized to junior doctors as a population, these junior doctors' stories point to various issues warranting further investigation, both philosophical and empirical. (shrink)

Futile treatment is one ethically challenging situation commonly encountered by junior doctors. By analysing an intern's story using a role virtues framework, I propose a set of three steps for junior doctors facing this problem. I claim that junior doctors ought always to investigate the rationale underlying decisions to proceed with apparently futile treatment and discuss their concerns with their seniors, even if such discussion will be difficult. I also suggest that junior doctors facing this ethical challenge ought always to (...) be willing to initiate and engage in ethical dialogue, and that in some situations further action (such as taking concerns outside the team or refusing to participate in treatment) may be morally appropriate. (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)

This paper argues that the professional situation of junior doctors is unique in ethically important ways and thus that ethics work focusing on junior doctors specifically is necessary. Unlike the medical student or the more senior doctor, the doctor in his or her early postgraduate years is simultaneously a responsible health professional, a subjugate learner and a human resource. These multiple roles generate the set of ethical issues faced by junior doctors, a set that has some overlaps with that faced (...) by medical students and with that faced by more experienced doctors but is far from completely continuous with either. Further, the multiple roles that junior doctors play affect their options for negotiating the ethical challenges that they face. Their position determines not only the content of the set of ethical issues that they encounter, but also the kinds of actions they can take in the face of these challenges. Thus considering junior doctors only in combination with medical students or more senior doctors fails on two fronts. Firstly, only a very incomplete set of the ethical issues faced by junior doctors will be addressed, and, secondly, the constraints associated with the specific professional situation of junior doctors will not be adequately considered, limiting the practical applicability for these agents of any such analyses. (shrink)

The claim that human reproductive cloning constitutes an affront to human dignity became a familiar one in 1997 as policymakers and bioethicists responded to the announcement of the birth of Dolly the sheep. Various versions of the argument that reproductive cloning is an affront to human dignity have been made, most focusing on the dignity of the child produced by cloning. However, these arguments tend to be unpersuasive and strongly criticised in the bioethical literature. In this paper I put forward (...) a different argument that reproductive cloning is an affront to human dignity, one that looks beyond the dignity of the child produced. I suggest that allocating funds to such a pursuit can affront human dignity by diverting resources away from those existing people who lack sufficient health to enable them to exercise basic rights and liberties. This version of the argument posits cloning as an affront to human dignity in particular circumstances, rather than claiming the technology as intrinsically inconsistent with human dignity. (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)

Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. Likewise, ethics is not usually part of Alcohol and Other Drugs training or practice. This means that resources available to Alcohol and Other Drugs clinicians navigating ethical challenges are not widely available. This paper describes a systematic review of literature at the intersection of ethics and clinical practice in Alcohol and Other Drugs. The review will potentially benefit Alcohol and Other Drug practitioners by (...) outlining what resources currently available and will also highlight potential directions for future research. The review searched for all published work in ethics at the intersection with Alcohol and Other Drugs. Searches within academic databases, the World Wide Web, and within journal Tables of Contents identified 18 relevant papers from 1985 onwards. An inductive process of categorisation produced two categories of this literature. The first was codes of ethics, further divided into rule-... (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)

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)