Even more than for other treatments, great importance must be given to informed consent in the case of electroconvulsive therapy. In a percentage of cases, the symbolic connotation of the treatment, even if mostly and intrinsically negative, may actually be a determining factor in the patient’s motives for giving consent. On an ethical and medicolegal level, the most critical point is that concerning consent to the treatment by a psychotic subject with a severely compromised ability to comprehend the nature and (...) objective of the proposed therapy, but who nonetheless expresses his consent, for reasons derived from delusional thoughts. In fact, this situation necessarily brings to light the contradiction between an explicit expression of consent, a necessary formality for the commencement of therapy, and the validity of this consent, which may be severely compromised due to the patient’s inability to comprehend reality and therefore to accept the proposal of treatment, which is intrinsic to this reality. With the use of an electric current, the symbolic experience associated with anaesthesia, and the connection to convulsions, ECT enters the collective consciousness. In relation to this, ECT is symbolic of these three factors and hooks on to the thoughts, fears, feelings and expectations of delusional patients. These are often exemplified in the violent intervention of the persecutor in the patient with schizophrenia, the expected punishment for the ’error’ committed for which the depressed patient blames himself and the social repression of the maniacal patient’s affirmation of his inflated self-esteem. (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)

Healthcare professionals are currently working under extreme pressure as they respond to the pandemic outbreak of COVID-19. At the time of writing, there is currently no effective vaccine or anti-viral treatment. The pandemic is fast-moving, relatively unpredictable and of uncertain duration. In many countries, it is placing an enormous stress on healthcare resources and providing care to existing standards is proving difficult. Unfortunately, in some countries, health services have been overwhelmed. The impact of the pandemic on resource-poor countries is of (...) particular concern. This extraordinary situation is raising, or has the potential to raise, many ethical challenges for doctors delivering care to patients. It is possible, for example, that there may be points in this pandemic where decisions need to be made about who should have access to finite specialised intensive care beds, drugs and equipment. This has happened in some countries and, despite efforts by the UK Government to reduce demand and increase supply, it is still possible that this could happen in the UK. Some hospital trusts in the UK are already reporting concerningly low supplies of oxygen and vital medicines such as propofol and alfentanil.1 In these circumstances, where not everyone can be treated, difficult ethical decisions will have to made. For example, can some patients be prioritised over others? How should a doctor decide on which patients to treat? Can treatment be withdrawn from patients who are currently being treated, but are not responding, in order to offer treatment to those who may have a better chance of benefiting? The UK is also reporting concerningly low supplies of vital personal protective equipment for frontline workers, raising the question - what are a doctor’s obligations to treat patients, in circumstances that present a high …. (shrink)

The empirical turn in bioethics and the deliberative turn in democracy theory occurred at around the same time, one at the intersection of bioethics and social science,1 2 the other at the intersection of political philosophy and political science.3–5 Empirical bioethics and deliberative democratic approaches both engage with immediate problems in policy and practice with normative intent, so it was perhaps inevitable that they would eventually find one another,6–8 and that deliberative research would become more common in bioethics.9 This commentary (...) responds to a paper by Ford et al, who ran a single jury of 18 people in Brighton in the UK in June 2018.10 The jury were asked to consider whether secondary research use of non-structured, free-text data from medical records should be permitted. I will consider three issues: the effort required in deliberative work, the challenge of sampling and selection of jurors and the basis for drawing normative conclusions from deliberative research. First: this report makes clear the effort involved in running a jury. These researchers contracted an external agency experienced in the method, established an oversight committee of policy-makers with power to act, developed expert witness briefs, selected witnesses and coordinated their testimony, and created a questionnaire to measure participants’ views, activities to support their understanding, and a scenario for consideration. …. (shrink)

A new argument has been made against moral enhancement by authors who are otherwise in favour of human enhancement. Additionally, they share the same evolutionary toolkit for analysing human traits as well as the belief that our current morality is unfit to deal with modern problems, such as climate change and nuclear proliferation. The argument is put forward by Buchanan and Powell and states that other paths to moral progress are enough to deal with these problems. Given the likely costs (...) and risks involved with developing moral enhancement, this argument implies moral enhancement is an unpromising enterprise. After mentioning proposed solutions to such modern problems, I will argue that moral enhancement would help implement any of them. I will then detail Buchanan and Powell’s new argument disfavouring moral enhancement and argue that it makes too bold assumptions about the efficacy of traditional moral progress. For instance, it overlooks how that progress was to achieve even in relatively successful cases such as the abolition of slavery. Traditional moral progress is likely to require assistance from non-traditional means in order to face new challenges. (shrink)

We note a range of interesting and challenging points which take forward the discourse around the ethics of sharing patient data. Of most note are criticisms of our jury recruitment and methods; questioning how we can engender trust and support from the wider, uninformed public when we only have the view of a small informed public; asking what work needs to be done to ethically transfer data from a clinical care setting to that of research; suggesting that dynamic consent with (...) opt-outs could be an avenue for allowing patients more control over the use of their medical data for research; and asking how we bridge from ‘is’ to ‘ought’. The first criticisms to be addressed focus on the recruitment and methods of our jury, raised by Carter.1 She suggests that the selection of participants, using a population distribution of responses to a data-sharing question, resulted in a jury too positively oriented to data sharing at the outset. Further, she suggests that we counted individual votes rather than allowing the jury to come to a collective position, that jurors were not asked to prioritise the common good, that we present a lack of data from the jury’s deliberations, and as a result, there is a difficulty with evaluating the reasoning and authenticity of deliberation. Regarding recruitment of our jury, our stated aim, which we acknowledge is not shared by all juries, was to achieve a sample which broadly matched what we would expect if …. (shrink)

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical (...) policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data. (shrink)

In his subtle and well-argued paper,1 Ben Davies argues for a limited but still strong right not to know held by patients against medical professionals. Patients may have such a right against health professionals to be sure, but if and only if, that right has been granted to them by the health professionals in question, their professional body or rules regarding professional conduct. In my judgement, patients do not have a moral RNTK and should have no such legal right neither, (...) for the simple and sufficient reason that the granting of such a right would conflict with the equally, if not more powerful rights, of all people to free speech and freedom of honest expression, rights which trump rights deriving from the agreement of professionals or professional bodies. Ben Davies ends his paper, thus: > Opposition to the RNTK in practice, then, cannot derive solely from the claim that patients often have an obligation to acquire knowledge about their condition. Patients may have an obligation to know, and yet a right, held against medical professionals, not to be told information that they do not want to receive.1 Of course patients ‘may have an obligation to know, and yet a right, held against medical professionals, not to be told information that they do not want to receive’, but it happens that …. (shrink)

On 26 February 2020, the German Constitutional Court rejected a law from 2015 that prohibited any form of ‘business-like’ assisted suicide as unconstitutional. The landmark ruling of the highest federal court emphasised the high priority given to the rights of autonomy and free personal development, both of which constitute the principle of human dignity, the first principle of the German constitution. The ruling echoes particularities of post-war Germany’s end-of-life debate focusing on patient self-determination while rejecting any discussion of active assistance (...) to die through a lethal injection administered by a doctor. This brief report discusses the ruling in the light of the broader sociopolitical and historical context of the German end-of-life debate. (shrink)

We thank Lucy Frith for her thought-provoking response1 to our paper, where we argued that it would be ethically acceptable to contact an anonymous egg donor to help facilitate diagnostic genetic testing for a donor-conceived child.2 While we read Frith’s commentary with interest, we still think that the egg donor should be contacted in the case that we describe. Frith raises concerns as to whether contact would constitute ‘ overriding consent ’, thus ’ potentially set a dangerous precedent ’ for (...) existing gamete donors and donor-conceived children. In contrast, we consider that contacting the egg donor would not override her consent, as her views on contact in the instance that has now arisen were never sought. Our view is that given we do not currently know what she might want, contacting her is a more legitimate way of respecting her autonomy than trying to anticipate her likely answer. We strongly agree with Frith’s suggestion that future consent discussions around gamete donation should make explicit ‘ the possibility of being contacted in the future if there is a relevant reason for doing so ’. Frith expresses a concern that contact would constitute ‘ overriding [the egg donor’s] consent ’, meaning that we have to ‘ justify contacting the egg donor against her previously stated wishes not to be contacted ’. However, our argument is that the egg donor was never asked whether or not she was happy to be contacted in the circumstances that have now arisen. Thus, there is no consent to be overridden, given that she never gave or withheld it in the first place. Frith rightly acknowledges that her arguments therefore ‘ [do] not fully address [our] main worry that the donor’s wishes are essentially unknown, as she was not asked about this specific situation and …. (shrink)

A learning health system seeks to establish a closer connection between clinical care and research and establishes new responsibilities for healthcare providers as well as patients. A new set of technological approaches in medication adherence monitoring can potentially yield valuable data within an LHS, and raises the question of the scope and limitations of patients’ responsibilities to use them. We argue here that, in principle, it is plausible to suggest that patients have a prima facie obligation to use novel adherence (...) monitors. However, the strength of the obligations depends considerably on the extent to which data that adherence monitors generate are, in fact, used to further the goals of LHSs. The way in which data ownership is structured in the USA poses a considerable challenge here, while the European Union framework offers a more promising alternative. (shrink)

Interest in the use of medical data for health research is increasing. Yet, as Elizabeth Ford and colleagues rightly note, there are open questions about the suitability of existing ethical and regulatory oversight frameworks for these research approaches. In their feature article, ‘Should free text data in electronic medical records be shared for research? A citizen’s jury study in the United Kingdom’, Ford et al report the results of a deliberative engagement study in which 18 members of the public were (...) asked whether and under what conditions free text data from medical records should be shared for research purposes. The authors’ explicit aim was to inform national policy on sharing medical text. Public attitudes—stated otherwise, the attitudes of patients whose medical information will ultimately be used under any data sharing policy—are a necessary input into ethical and regulatory decision-making about use of medical data for health research. Though public attitudes will rarely be determinative, they must be weighed in order to uphold the ethical principle of respect for persons.1 Ford et al ’s article is, therefore, an important contribution to …. (shrink)

After initially emerging in China, the coronavirus outbreak has advanced rapidly. The World Health Organization has recently declared it a pandemic, with Europe becoming its new epicentre. Italy has so far been the most severely hit European country and demand for critical care in the northern region currently exceeds its supply. This raises significant ethical concerns, among which is the allocation of scarce resources. Professionals are considering the prioritisation of patients most likely to survive over those with remote chances, and (...) this news has triggered an intense debate about the right of every individual to access healthcare. The proposed analysis suggests that the national emergency framework in which prioritisation criteria are currently enforced should not lead us to perceive scarce resources allocation as something new. From an ethical perspective, the novelty of the current emergency is not grounded in the devastating effects of scarce resources allocation, which is rife in recent and present clinical practice. Rather, it has to do with the extraordinarily high number of people who find themselves personally affected by the implications of scarce resources allocation and who suddenly realise that the principle of ‘equals should be treated equally’ may no longer be applicable. Along with the need to allocate appropriate additional financial resources to support the healthcare system, and thus to mitigate the scarcity of resources, the analysis insists on the relevance of a medical ethics perspective that does not place the burden of care and choice solely on physicians. (shrink)

Healthcare systems around the world are struggling to maintain a sufficient workforce to provide adequate care during the COVID-19 pandemic. Staffing problems have been exacerbated by healthcare workers refusing to work out of concern for their families. I sketch a deontological framework for assessing when it is morally permissible for HCWs to abstain from work to protect their families from infection and when it is a dereliction of duty to patients. I argue that it is morally permissible for HCWs to (...) abstain from work when their duty to treat is outweighed by the combined risks and burdens of that work. For HCWs who live with their families, the obligation to protect one’s family from infection contributes significantly to those burdens. There are, however, a range of complicating factors including the strength of duty to treat which varies according to the HCW’s role, the vulnerability of family members to the disease, the willingness of family members to risk infection and the resources available to the HCW to protect their family. In many cases, HCWs in ‘frontline’ roles with a weak duty to treat and families at home will be morally permitted to abstain from work given the risks posed by COVID-19; therefore, society should provide additional incentives to maintain sufficient staff in these roles. (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)

As the capacity to generate, store, aggregate and combine ever greater volumes and types of data about individuals, behaviours and interactions continues to expand apace, so too does the challenge of ensuring suitable and appropriate governance of that data. In broad terms, the challenge is simple; how to ensure the benefits of data, such as improvements in service delivery or individual and collective well-being, while avoiding harms such as discrimination, injustice or placing undue burdens on individuals and groups. The difficulty, (...) as ever, lies in the details. As Nicol et al 1 observe, informed consent is important but does not replace the need for an appropriate governance framework that covers the wider ecosystem of data generation, use and reuse. Moreover, there is no one universal oversight mechanism for data sharing, but what counts as ‘appropriate’ must take into account the context and purpose of data use. In this regard, the study by Ford et al is an important and valuable contribution to our understanding of the …. (shrink)

Medical assistance in dying legislation in Canada followed much deliberation after the Supreme Court of Canada’s ruling in Carter v. Canada. Included in this deliberation was the Special Joint Committee on Physician Assisted Dying’s recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children’s voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the (...) possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children’s voices could be mobilised in the life or death context of MAID. We conclude that children’s voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice. (shrink)

Infants are unable to make their own decisions or express their own wishes about medical procedures and treatments. They rely on surrogates to make decisions for them. Who should be the decision-maker when an infant’s biological parents are also minors? In this paper, we analyse a case in which the biological mother is a child. The central questions raised by the case are whether minor parents should make medical decisions on behalf of an infant, and if so, what are the (...) limits to this decision-making authority? In particular, can they refuse treatment that might be considered best for the infant? We examine different ethical arguments to underpin parental decision-making authority; we argue that provided that minor parents are capable of fulfilling their parental duties, they should have a right to make medical decisions for their infant. We then examine the ethical limits to minor parents’ decision-making authority for their children. We argue that the restricted authority that teenagers are granted to make medical decisions for themselves looks very similar to the restricted autonomy of all parents. That is, they are permitted to make choices, but not harmful choices. Like all parents, minor parents must not abuse or neglect their children and must also promote their welfare. They have a moral right to make medical decisions for their infants within the same ‘zone of parental discretion’ that applies to adult parents. We conclude that adult and minor parents should have comparable decision-making authority for their infants. (shrink)

A person’s body can, it seems, survive well after losing the capacity to support Lockean personhood. If our rights in our bodies are, basically, rights in our selves or persons, this seems to imply that we do not after all have a right to direct the disposition of our living remains via advance directive. Govind Persad argues that our rights over our bodies persist after the loss of our personhood; we have a right to insist that our bodies die after (...) we are gone for much the same reason that we have a right to decide whether or not to donate organs, after our death. Persad’s conclusion may be right; however, his arguments regarding body rights are insufficient. Persad’s suggestion that our rights in our bodies come from a history of acting and sensing through them cannot, quite, be right, since we act and sense through tools, as well. Nor should we accept Persad’s arguments, from intuitions in cases involving posthumous pregnancy, that our posthumous body rights are powerful enough to allow choices that will result in the death of beings that need our living remains to survive. Problems with these intuitions point to a more general concern for this sort of case-based intuitionistic method: it presupposes that what body rights we have is a matter of ‘natural right’, accessible to all, rather than a function of how social institutions do or should resolve conflicts about the proper way of defining our authority over our bodies. (shrink)

The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...) belongs to the patient’. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are ‘about the patient’, and therefore the patient has relevant interests, without jumping to the conclusion that the data ‘belongs to the patient’. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise. (shrink)

The idea of a right not to know emerged in the late 20th century, largely in response to the early incorporation of genetic testing into clinical care. While a few commentators took a more absolute view about the strength of the RNTK, most of the scholarship was openly sceptical of the concept, or at least was willing to acknowledge that the RNTK was defeasible.1 After two decades of relative quiet, it was surprising, then, that the RNTK reappeared with a seemingly (...) widespread consensus that it deserved to be treated as an absolute right. In response to the American College of Medical Genetics and Genomics recommendation2 to actively search for a limited set of high-value medical variants as a default many bioethics commentators came forward to endorse a strong RNTK.3 While ‘deliberate ignorance’ is a complicated moral and psychological concept,4 I was and remain sceptical of a strong RNTK in all cases, and largely support the novel arguments put forth by Ben Davies. But he makes two moves that deserve additional discussion and analysis. Specifically, I have concerns about conflating the provision of medical information with the separate decision about whether or not to act on …. (shrink)

By the time this issue of the Journal is published, the world will have moved on. More will be known, than at the time of writing this, about how medicine and societies are responding to the ethical challenges presented by the COVID-19 coronavirus pandemic. In his guest editorial,, Dominic Wilkinson writes from the perspective of a UK clinician and ethicist facing the then still impending likelihood that ‘the number of critically ill patients will overwhelm the capacity of intensive care units’ (...) and that ‘it will simply not be possible to provide mechanical ventilation to every patient who might need it’. The ‘unpalatable question’ for clinicians then will be ‘which patient to save’? In his response to this question, Wilkinson identifies benefit and fairness as the key ethical values at stake in such triage decisions: ‘how much ethical weight is given to each of these values’, he argues, will depend not only on the need to find a fair balance between them, but also on the availability of resources. ‘As resources become more limited’, he writes, ‘there is some need to temper equality with benefit’. In the limited provision of publicly funded intensive care, there already exists ’a need to decline admission to intensive care for some patients who have a low probability of survival, or of benefiting from the treatment’: but ‘in a situation where resources are overwhelmed, and choice cannot be avoided’, he argues, the ethical balance must shift to emphasizing benefit’, which in practice means prioritising ‘those patients who have the highest chance of surviving’, or ‘a shorter duration of intensive care stay’. Wilkinson does not …. (shrink)

Ethical arguments about assisted dying often focus on whether or not respect for an individual’s autonomy gives a reason to offer them an assisted death if they want it. In this paper, I present an argument for legalising assisted dying which appeals to the autonomy of people who don’t want to die. Adding that option can transform the nature of someone’s choice set, enabling them to pursue other options voluntarily where that would otherwise be harder or impossible. This does not (...) contradict the more familiar arguments for legalising assisted dying based on the autonomy of those who seek to die. But it does suggest that a wider constituency of support for that legislative change might be created by emphasising that one need not be in that position to be benefited by the change. (shrink)

I am grateful for these four incisive commentaries on my paper, ‘The right not to know and the obligation to know’ and regret that I cannot address every point made in these challenging responses to my work. Benjamin Berkman1 worries that I conflate medical information with medical action. I argue that patients sometimes have obligations to receive information, since medical decisions made with incomplete information may generate higher costs. As Berkman notes, though, information is no guarantee of action, and it (...) is patients’ actions which will affect their health. Yet, he points out, I explicitly deny that patients should be ‘forced into a particular action’. I acknowledge a missed opportunity to explicitly discuss the relationship between information and action. Still, Berkman’s discussion itself conflates two important ideas. As I argue, my having an obligation does not entail a permission for others to enforce that obligation. I do think patients sometimes have obligations to make certain health-related choices, specifically when this will not involve significant sacrifices of other values and will reduce future healthcare costs, but this does not mean anyone can legitimately force them to do so. Importantly, the obligation to be informed does not depend on your being in this position. If you face a reasonable chance of having a specific obligation, …. (shrink)

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that (...) a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations. (shrink)

The ‘right not to know’ can be used by patients as a safeguard against the effects that certain medical information can have on their well-being. At first glance, one might reason it suitable for a patient to enact their RNTK. However, although Davies states that RNTK gives people the ability to both protect themselves from self-perceived harm and exercise their autonomy, I will argue that ‘not knowing’ hinders patients’ ability to exercise their existential freedom and represents what Sartre calls an (...) instance of ‘bad faith’. Davies argues that the RNTK takes precedence over many related issues and objections associated with a patient’s decision to implement such a resolution.1 Fundamentally, the RNTK gives patients power to protect themselves from subjective harm and to exercise their autonomy. In most cases, objectors of RNTK cite the negative impact on the patient’s state of health, which affects not only the patient but also those persons who would also be negatively affected by patient health outcomes. For the majority of objectors, patients have moral obligations to lessen the degree of burden on others, which refusal can initiate. However, Davies concludes, ‘…the burden placed on others is not sufficiently significant …. (shrink)

My sexual rights puzzle according to which positive sexual rights are not compatible with negative sexual rights has been recently criticised in the Journal of Medical Ethics by Steven J Firth, who has put forward three objections to the puzzle. In this brief response, I analyse and reject each of these three objections.

In healthcare broadly, and especially in genetic medicine, there is an ongoing debate about whether patients have a right not to know information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable burdens on a publicly funded healthcare system might form the basis for an obligation (...) to acquire relevant health information, and hence refute the RNTK. He also makes the interesting argument that an obligation to know does not necessarily limit the RNTK. Davies summarises the more prominent arguments against the RNTK, including harm-to-others arguments that focus on potential harms to individuals related to the patient. However he then considers the RNTK in the context of the obligations that people have to each other within a publicly funded healthcare system. So rather than focusing on harms to specific individuals, Davies’ argument is instead based on the wrong of needlessly consuming public healthcare resources. If a person avoids health-related information and thereby exacerbates their health problems, this makes them more complex and expensive to treat. Davies argues that this constitutes …. (shrink)

Institutional guidelines for transgender children and adolescent minors fail to adequately address a critical juncture of care of this population: how to proceed if a minor and their parents have disagreements concerning their gender-affirming medical care. Through arguments based on ethical, paediatric, adolescent and transgender health research, we illustrate ethical dilemmas that may arise in treating transgender and gender diverse youth. We discuss three potential avenues for providing gender-affirming care over parental disagreement: legal carve-outs to parental consent, the mature minor (...) doctrine and state intervention for neglect. Our discussion approaches this parent–child disagreement in a manner that prioritises the developing autonomy of transgender youth in the decision-making process surrounding medically assisted gender affirmation. We base our arguments in the literature surrounding the risks and benefits of gender-affirming therapy in transgender children and the existing legal basis for recognising minors’ decision-making authority in certain medical situations. (shrink)

Tigard suggests that the medical community would benefit from continuing to promote notions of individual responsibility and blame in healthcare settings. In particular, he contends that blame will promote systematic improvement, both on the individual and institutional levels, by increasing the likelihood that the blameworthy party will ‘own up’ to his or her mistake and apologise. While we agree that communicating regret and offering a genuine apology are critical steps to take when addressing patient harm, the idea that medical professionals (...) should continue to ‘take the blame’ for medical errors flies in the face of existing science and threatens to do more harm than good. We contrast Dr Tigard’s approach with the current literature on blame to promote an alternative strategy that may help to create lasting change in the face of unfortunate error. (shrink)

Clinical trials of xenotransplantation may begin early in the next decade, with kidneys from genetically modified pigs transplanted into adult humans. If successful, transplanting pig hearts into children with advanced heart failure may be the next step. Typically, clinical trials have a specified end date, and participants are aware of the amount of time they will be in the study. This is not so with XTx. The current ethical consensus is that XTx recipients must consent to lifelong monitoring. While this (...) presents challenges to the right to withdraw in the adult population, additional and unanswered questions also linger in the paediatric population. In paediatric XTx, parents or guardians consent not only to the initial treatment of the child but also to lifelong monitoring, thus making a decision whose consequences will remain present as the child develops the capacity for assent, and finally the capacity for informed consent or refusal. This article presents and evaluates unanswered paediatric ethical questions in regard to the right to withdraw from XTx follow-up in the paediatric population. (shrink)

While artificial womb technology is currently being studied for the purpose of improving neonatal care, I contend that this technology ought to be pursued as a means to address the unprecedented rate of unintended pregnancies. But ectogenesis, alongside other emerging reproductive technologies, is problematic insofar as it threatens to disrupt the natural link between procreation and parenthood that is normally thought to generate rights and responsibilities for biological parents. I argue that there remains only one potentially viable account of parenthood: (...) the voluntarist account, which construes parental rights as robust moral obligations that must be voluntarily undertaken. The problem is that this account mistakenly presumes a patriarchal divide between procreation and parenthood. I propose a reframing of procreation and parenthood from a feminist perspective that recognises gestational motherhood as involving robust moral obligations that ought to be voluntarily undertaken. If this were the case, all gestational mothers would be, by definition, willing mothers. To make this happen I argue that ectogenesis technology must be a widely available reproductive option. (shrink)

This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration at the end of life. This case raises important ethical and legal questions regarding a third person’s right to judge the value of another person’s life and the concept of ‘wrongful life’. In our brief report, we discuss the concepts of the ‘value of life’ and wrongful life, which were evoked by the court, and how these (...) concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment. However, it is unclear to what extent physicians’ decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the ‘safe’ option for the physician, and hence, as always appropriate. (shrink)

In this paper, I argue that men should take primary responsibility for protecting against pregnancy. Male long-acting reversible contraceptives are currently in development, and, once approved, should be used as the standard method for avoiding pregnancy. Since women assume the risk of pregnancy when they engage in penis-in-vagina sex, men should do their utmost to ensure that their ejaculations are responsible, otherwise women shoulder a double burden of pregnancy risk plus contraceptive responsibility. Changing the expectations regarding responsibility for contraception would (...) render penis-in-vagina sex more equitable, and could lead to a shift in the discourse around abortion access. I describe the sex asymmetries of contraceptive responsibility and of pregnancy-related risk, and offer arguments in favour of men taking primary responsibility for contraception. My arguments centre on: analogies between contraception and vaccination, and unwanted pregnancy and disease; a veil-of-ignorance approach, in which I contend that if a person were not told their sex, they would find a society in which men were expected to acquire and use effective contraceptives the fairest arrangement for everyone. (shrink)

In a critique of my work on ‘taking the blame’ as a response to medical errors, my position on the potential goods of individual responsibility and blame is challenged. It is suggested that medicine is a ‘team sport’ and several rich examples are provided to support the possible harms of practitioner self-blame. Yet, it appears that my critics have misunderstood my demands and to whom they are directed. With this response, I offer several clarifications of my account, as well as (...) a reiteration on the role of self-blame after medical error. (shrink)

The COVID-19 coronavirus pandemic raises a host of challenging ethical questions at every level of society. However, some of the most acute questions relate to decision making in intensive care. The problem is that a small but significant proportion of patients develop severe viral pneumonitis and respiratory failure. It now seems likely that the number of critically ill patients will overwhelm the capacity of intensive care units within many health systems, including the National Health Service in the UK. The experience (...) of Northern Italy—a couple of weeks ahead of the UK, suggests that it will simply not be possible to provide mechanical ventilation to every patient who might need it. When the crunch comes, the unpalatable question facing clinicians is which patient to save. There are some obvious strategies to avoid or reduce the problem—through measures to increase intensive care capacity, and via society-level interventions to reduce the spread of the virus. These are vitally important, but unfortunately they are unlikely to prevent the problem of demand outstripping supply from occurring. What, then, should clinicians do? How should they allocate the scarce resource of intensive care—particularly over the coming weeks as the crisis escalates? There are different values at stake in triage decisions, but at a basic level the key values are those of benefit and …. (shrink)

This paper argues that a major contribution to women’s under-representation and the gender pay gap in surgery is the interaction and aggregation of many small wrongs, or as they have come to be called in the literature, microinequities. Further, the paper argues that existing strategies do not adequately address the problems faced by women surgeons and cannot do so without an understanding of those wrongs as microinequities. Insights from the literature on ethics and microinequities are thought to be able to (...) inform new strategies.1 The study identifies four different kinds of gender bias: workplace discrimination, epistemic injustice, stereotyped roles and objectification. The different kinds of gender bias interact with one another and add up in ways that pose serious setbacks to the careers of women surgeons. In addition to being small wrongs, microinequities share other features. They are cumulative; they interact with one other; they are often invisible; and they are implicit or unintended. My comments are going to focus on the response to microinequities, …. (shrink)

### British Medical association survey on physician-assisted dying closes Previous Ethics briefings have highlighted the survey of members on physician-assisted dying being carried out by the British Medical Association.1 This survey closed at midnight on Thursday 27 February. In total, 29 011 members responded – 20.1% of all members who received an invitation to participate – making this one of the largest surveys of medical opinion carried out on this issue, ever. The results of the survey will not make BMA (...) policy, but will inform a debate and discussion at the organisation’s main policy-making conference, the annual representative meeting in June this year. You can find out more about the survey and how it was carried out at www.bma.org.uk/PAD This page will continue to be updated when more information about the survey results is available. ### Royal College of General Practitioners remains opposed to a change in the law on assisted dying In October 2019, the Royal College of General Practitioners began surveying its members on the College’s position on physician-assisted dying. The College published its results on 21 February. Of the 49 539 members invited to participated, 6674 responded – a response rate of 13.47%.2 In response to a question about what the College’s position on the law on assisted dying should be: Following the results of the survey, the RCGP Council decided that the College should continue to oppose a change in the law on assisted dying. ### Belgian doctors acquitted in country’s first criminal euthanasia case As noted in previous Ethics briefings, three Belgian doctors faced criminal charges of “unlawfully poisoning” a …. (shrink)

In ‘Abortion and deprivation: a reply to Marquis’, I argued that Marquis’ argument about abortion encounters the Epicurean Challenge. In this essay, I continue the conversation begun there. I aim to motivate the Challenge further by examining Marquis’ argument on his own terms and responding to objections about whom death deprives, whether we should focus on the action of killing or the result of death, and how harms suffered before existence compare to harms suffered after death. Finally, I suggest that (...) perhaps the solution to the ethics of killing lies in considering another account of harm entirely—one that does not rely on deprivation. (shrink)

ObjectiveA high prevalence of authorship problems can have a severe impact on the integrity of the research process. We evaluated the authorship practices of clinicians from the same university hospital in 2019 to compare them with our 2003 data and to find out if the practices had changed.MethodsPractitioners were randomly selected from the hospital database. The telephone interviews were conducted by a single researcher using a simplified interview guide compared with the one used in 2003. The doctors were informed that (...) their answers would be aggregated without the possibility of identifying the respondents. During the interviews, the researcher ticked the boxes with the answers on a paper file.ResultsWe interviewed 26 clinicians from various medical specialties. They were unfamiliar with the ICMJE criteria for writing medical articles and felt that these criteria were not well met in general. With regard to ways of reducing the practice of honorary authors, the participants clearly felt that asking for a signature was hypocritical and of little use. The ghost authors were well known; this practice was considered as rather rare. The ‘publish or perish’ has always been cited as being responsible for bad practices. We compared these results with those observed in 2003 and no improvement has been observed in the past 15 years.ConclusionFor the second time in France, within a 15-year interval, we have shown that the ICMJE criteria were ignored and that honorary authorship was frequent. (shrink)

If there is a single thread running through this issue of the journal, it may be the complex interplay between the individual and the system of which they are apart, highlighting a need for systems thinking in medical ethics and public health.1 2 Such thinking raises at least three sorts of questions in this context: normative questions about the locus of moral responsibility for change when a system is unjust; practical questions about how to change systems in a way that (...) is morally appropriate without triggering unintended, potentially harmful side-effects; and epistemic questions about how to predict the multidimensional consequences of a proposed change or set of changes to an intricate social system such as healthcare.3 These questions crop up throughout the issue, as I will discuss, but my focus is the target article and linked commentaries on gender bias in the surgical profession. Hutchison conducted in-depth interviews with 46 Australian women surgeons and surgical trainees, taking care to avoid leading questions regarding gender bias or gendered mistreatment. Nevertheless, despite minimal prompting, at least four types of gender-related concerns were described by the surgeons,whether directly or indirectly: 1. structural bias in workplace factors, including insufficient parental leave for women, exclusion from men’s spaces where informal training may occur, and a dearth of senior female role models; 2. epistemic injustices including unfair doubting of women’s surgical competence or knowledge relative to men; 3. stereotyped expectations that women surgeons would or should shoulder the burden of medical carework, for example, by attending to patients’ emotional needs; and 4. objectification, both by colleagues and patients, including sexual innuendo, remarks about clothing, and even outright sexual assault. Each of these concerns is disturbing on its own, and yet they do not operate in isolation. Rather, they interact …. (shrink)

In a recent article in this journal, Anna Christensen raises an ‘Epicurean challenge’ to Don Marquis’ much-discussed argument for the immorality of abortion. According to Marquis’ argument, abortion is pro tanto morally wrong because it deprives the fetus of ‘a future like ours’. Drawing on the Epicurean idea that death cannot harm its victim because there is no subject to be harmed, Christensen argues that neither fetuses nor anyone else can be deprived of a future like ours by dying. Thus, (...) Christensen suggests, the moral wrongness of abortion cannot be grounded in the relevant individual’s being deprived of a future like ours. In this reply, I argue that on no interpretation of Christensen’s Epicurean challenge does it succeed. (shrink)

This personal narrative tugs at the heart strings. However, personal narratives are not sufficient to justify public funding for any screening policy. We have to take seriously the ‘just caring’ problem. We have only limited resources to meet virtually unlimited health care needs. No doubt, screening tests often save lives. The author wants public funding for prostate-specific antigen screening for prostate cancer. However, why only prostate cancer? Numerous cancers at various stages can be screened for. Are all of them equally (...) deserving of public funding? What about screening for a very long list of other life-threatening medical disorders? There is nothing ethically special about cancer. Where does the money come from to pay for all these screening tests? Do we reduce expensive life-prolonging care for patients in late-stage diseases? Ultimately, a balance must be struck between saving statistical lives through screening and saving identifiable lives in the intensive care unit. Achieving a just balance requires rational democratic deliberation as justification for these choices, not personal narratives. (shrink)

Medical cannabis is widely available in the USA and legalisation is likely to expand. Despite the increased accessibility and use of medical cannabis, physicians have significant knowledge gaps regarding evidence of clinical benefits and potential harms. We argue that primary care providers have an ethical obligation to develop competency to provide cannabis to appropriate patients. Furthermore, specific ethical considerations should guide the recommendation of medical cannabis. In many cases, these ethical considerations are extensions of well-established principles of beneficence and nonmaleficence, (...) which indicate that providers should recommend cannabis only for conditions that have the strongest evidence base. Additionally, the contested status of cannabis in American culture raises specific issues related to shared decision-making and patient education, as well as continuing clinical education. (shrink)

BackgroundSelf-prescribing and prescribing to personal contacts is explicitly discouraged by General Medical Council guidelines.AimsThis study examines how widespread the practice of self-prescribing and prescribing to personal contacts is.MethodsA 16-item questionnaire was distributed via an online forum comprising 4445 young medical doctors, which asked respondents about previous prescribing to themselves, their families, friends and colleagues, including the class of medication prescribed. Demographic details were collected including medical grade and specialty.ResultsA total of 729 responses were obtained, the majority of which were from (...) young non-consultant hospital doctors from a range of specialties. Two-thirds of respondents had self-prescribed, over 70% had prescribed to family, and nearly 60% had prescribed to a friend or colleague. Older doctors were more likely to self-prescribe. Interns being less likely to self-prescribe was not unexpected, while general practitioners and paediatricians were more likely to self-prescribe. GPs, paediatricians and hospital medicine specialties were more likely to prescribe to family and surgeons were more likely to prescribe to friends. Some 3% to 7% who had self-prescribed had prescribed an opiate, benzodiazepine or psychotropic medication. Male doctors, anaesthetists and surgeons were more likely to self-prescribe opioids, while those in hospital medicine were more likely to self-prescribe psychotropic medications.ConclusionPrescribing outside the traditional doctor-patient relationship is widespread despite clear professional guidance advising against it. (shrink)

Women are under-represented in surgery, especially in leadership and academic roles, and face a gender pay gap. There has been little work on the role of implicit biases in women’s under-representation in surgery. Nor has the impact of epistemic injustice, whereby stereotyping influences knowledge or credibility judgements, been explored. This article reports findings of a qualitative in-depth interview study with women surgeons that investigates gender biases in surgery, including subtle types of bias. The study was conducted with 46 women surgeons (...) and trainees of the Royal Australasian College of Surgeons. Maximum variance sampling strategies ensured a comprehensive set of perspectives. Data were analysed using iterative thematic analysis to document and classify forms of gender bias experienced by the participants, including implicit bias and epistemic injustice. It found four types of bias affecting women surgeons: workplace factors such as access to parental leave and role models; epistemic injustices—unfair assessments of women surgeons’ credibility by patients and colleagues; stereotyped expectations that they will carry out more of surgery’s carework, such as meeting the emotional needs of patients and objectification. Implicit biases arose in each category. Given that many of the biases identified in this study are small, are harmless on their own and are not necessarily under anyone’s conscious control, important questions arise regarding how they cause harm and how to address them. I draw on theoretical work on cumulative harm to answer these questions. (shrink)

Let me first thank Samantha Brennan, Carolyn McLeod and Brandi Braud Scully for their detailed and constructive commentaries. In this brief response I wish to highlight and engage with three main points they raise. First, I will address McLeod’s argument that female surgeons are not merely harmed, but also wronged by the forms of bias found in the study. Second, I will discuss a concern voiced by both Scully and Brennan that my emphasis on small and implicit biases fails to (...) acknowledge the ongoing, significant problem of explicit bias. Third, and finally, I will engage with Brennan’s argument that institutional responses are the best way of addressing cumulative harms caused by microinequities. These concerns all connect with the difficult question of responsibility, a feature I draw out below. Carolyn McLeod argues that female surgeons’ interests in receiving equal treatment and opportunity are morally significant interests. As such, when these interests are set back by cumulative small biases the female surgeons are morally wronged. Moreover, she says, ‘it’s also hard to see how setting them back in this context could possibly be justified.’ McLeod is right to press me on this issue. In the article I have skirted around …. (shrink)

The legacy of colonial rule has permeated into all aspects of life and contributed to healthcare inequity. In response to the increased interest in social justice, medical educators are thinking of ways to decolonise education and produce doctors who can meet the complex needs of diverse populations. This paper aims to explore decolonising ideas of healing within medical education following recent events including the University College London Medical School’s Decolonising the Medical Curriculum public engagement event, the Wellcome Collection ’s Ayurvedic (...) Man: Encounters with Indian Medicine exhibition and its symposium on Decolonising Health, SOAS University of London’s Applying a Decolonial Lens to Research Structures, Norms and Practices in Higher Education Institutions and University College London Anthropology Department’s Flourishing Diversity Series. We investigate implications of ‘recentring’ displaced indigenous healing systems, medical pluralism and highlight the concept of cultural humility in medical training, which while challenging, may benefit patients. From a global health perspective, climate change debates and associated civil protests around the issues resonate with indigenous ideas of planetary health, which focus on the harmonious interconnection of the planet, the environment and human beings. Finally, we look further at its implications in clinical practice, addressing the background of inequality in healthcare among the BAME populations, intersectionality and an increasing recognition of the role of inter-generational trauma originating from the legacy of slavery. By analysing these theories and conversations that challenge the biomedical view of health, we conclude that encouraging healthcare educators and professionals to adopt a ‘ decolonising attitude ’ can address the complex power imbalances in health and further improve person-centred care. (shrink)

Background Design thinking is a tool for generating and exploring ideas from multiple stakeholders. We used DT principles to introduce students to the ethical implications of organ transplantation. Students applied DT principles to propose solutions to maximise social justice in liver transplant allocation. Methods A 150 min interactive workshop was integrated into the longitudinal ethics curriculum. Following a group didactic on challenges of organ donation in the USA supplemented by patient stories, teams of students considered alternative solutions to optimise fairness (...) of organ distribution and ethical implications of changing the current model. Facilitators led students through DT steps of empathy, defining the team’s point of view, ideating on potential solutions, prototyping a specific idea and testing the idea through oral presentation, with questions and answers by peers and faculty. The curriculum was evaluated with presurveys and postsurveys including quantitative and open-ended items. Results 100 first year medical students participated. Before the session, 75.3% of students had no practical experience with DT. Following participation, students reported an increased understanding of the current liver transplant allocation system and an increased appreciation of shortcomings of the current organ allocation system. After the session, 73.8% of students felt that DT could be used to approach complex health system problems. Discussion Students participating in a DT workshop displayed improved knowledge and attitudes toward organ transplantation and DT. In this pilot study, DT showed promise as a student-led approach emphasising collaboration and creativity in ethics curricula in medical education. (shrink)

The central concerns of Hutchison’s1 paper are the under-representation and unequal pay of women in surgery and the role that subtle gender biases play in explaining these phenomena. My comments will focus on how well executed and important this work is and also why we need more of it to fully understand the gravity of the situation for women in surgery and how it compares with similar situations for women in other fields. Hutchison argues that women in surgery experience many (...) subtle inequities that together help to explain their unequal representation and pay relative to men. She conducted a qualitative study that involved in-depth interviews of 46 women surgeons: fellows or trainees of the Royal Australasian College of Surgeons. Effort was taken to recruit participants who were diverse in various ways, including in their perspectives on sexual harassment in surgery. They were asked about barriers they had encountered in their careers but not specifically about whether they were targets of gender bias, implicit bias or the like. Despite not being prompted to do so, they gave responses that revealed consistent patterns of explicit sexism and of implicit gender bias, including bias that results in epistemic injustice. For example, the …. (shrink)

This narrative ethics exploration stems from my happy prostate-specific antigen story, though it should not have been, as I annually refuse my family physician’s recommendation to purchase PSA screening. The reason for my refusal is I teach ethics to medical students and of course must walk the talk, and PSA screening is not publicly funded in the province of Ontario, Canada. In addition, I might have taken false comfort in ‘but all you need is a good index finger’ to detect (...) prostate cancer, expounded by a senior physician at a national medical conference in 2010, and applauded by the large audience of physicians. I was compelled to begin this exploration out of survivor guilt, although I will not be a survivor for long, and as a mea culpa to the men similarly situated to me in having late diagnosis of prostate cancer, aggressive tumours and multiple metastases, but who unlike me are dead because they did not experience the physician–educator-based exceptionisms and coincidences that permit me to still be alive. Although my PSA story will always be a happy story, even when my life ends in a few years, the initiation of public funding of PSA screening for all men over 50 would make my PSA story an even happier story. (shrink)

When I was a 7 months pregnant medical student, an attending surgeon asked me to which specialty I would be applying. When I replied that I was hoping to match in general surgery, he touched my pregnant abdomen and said, “Not with that you’re not.” I am not alone. Gender bias and discrimination have been shown to negatively impact women surgeons throughout their careers and deter women from even applying in surgical fields.1 Bias against female surgical trainees leads to less (...) operative autonomy and higher dropout rates.2 3 Once faculty, women surgeons are less likely to reach leadership roles.4 Recent studies confirm the author’s assertion that implicit biases create substantial harm. The author has undertaken an important study, conducting in-depth interviews with 46 women surgeons in Australia that identifies four distinct types of bias causing cumulative harm. In all four types of biases: Workplace factors including leave policies and mentorship. Epistemic injustices, or unfair assessments of women surgeons’ credibility by patients and colleagues. Stereotyped expectations. Objectification, implicit biases were seen. While many of the broad factors impeding women in surgery are well known, the author argues that these subtler factors, including both implicit bias and epistemic injustice, have a large impact. The …. (shrink)

Here, I briefly respond to a recent paper by Julian Koplin, in which he criticises my earlier work in this journal. I show that Koplin has misunderstood the distinction I have made between pressure to vend and pressure with the option to vend. I also show that his pessimism about the market regulations I favour is unwarranted.

This theoretical paper argues for prioritarianism as an ethical underpinning for digital health in contexts of extreme disadvantage. In support of this claim, the paper develops three prioritarian principles for making ethical decisions for digital health programme design, grounded in the normative position that the greater the need, the stronger the moral claim. The principles are positioned as an alternative view to the prevailing utilitarian approach to digital health, which the paper argues is not sufficient to address the needs of (...) the worst off. As researchers of digital health, we must ensure that the most globally marginalised are not overlooked by overtly technocentric implementation practices. Consequently, the paper concludes by advocating for use of the three principles to support stronger critical reflection on the ethics involved in the design and implementation of digital health programmes. (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake rates are not intrinsically desirable (...) or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

BackgroundResearchers worry that patients in early-phase research experience unrealistic optimism about benefits and risks of participation. The standard measure of unrealistic optimism is the Comparative Risk/Benefit Assessment questionnaire, which asks people to estimate their chances of an outcome relative to others in similar situations. Such a comparative framework may not be a natural way for research participants to think about their chances.ObjectiveTo examine how people interpret questions measuring unrealistic optimism and how their interpretations are associated with their responses.MethodsUsing an early-phase (...) cancer trial vignette, we administered the CRBA to 297 adults from the general public. They estimated their comparative chances of risk and benefit, then provided rationales for their estimates.ResultsFor both CRBA benefit and risk questions, about 50% of respondents chose 0, and 50% chose a non-0 response. Respondents’ rationales for their estimates showed that overall only about 40%–44% gave comparative rationales, indicating that they interpreted the CRBA as intended. 68.7% of respondents who gave the ‘correct’ 0 rating gave comparative rationales, whereas only 11.6% of respondents who gave non-0 ratings did so. A similar trend was seen for chances of risk.ConclusionResearch participants may not understand comparative benefit and risk questions as intended; attributions of unrealistic optimism may require additional evidence that the respondents’ estimates are intended to be comparative. (shrink)

In recent years, online direct-to-consumer pharmaceutical companies have been created as an alternative method for individuals to get prescription medications. While these companies have noble aims to provide easier, more cost-effective access to medication, the fact that these companies both issue prescriptions as well as distribute and ship medications creates multiple ethical concerns. This paper aims to explore two in particular. First, this model creates conflicts of interest for the physicians hired by these companies to write prescriptions. Second, the lack (...) of direct contact from physicians may be harmful to prospective patients. After analysing these issues, this paper argues that there ought to be further consideration for regulation and oversight for these companies. (shrink)

Design of clinical trials for germline gene editing stretches current accepted standards for human subjects research. Among the challenges involved is a set of issues concerning intergenerational monitoring—long-term follow-up study of subjects and their descendants. Because changes made at the germline would be heritable, germline gene editing could have adverse effects on individuals’ health that can be passed on to future generations. Determining whether germline gene editing is safe and effective for clinical use thus may require intergenerational monitoring. The aim (...) of this paper is to identify and argue for the significance of a set of ethical issues raised by intergenerational monitoring in future clinical trials of germline gene editing. Though long-term, multigenerational follow-up study of this kind is not without precedent, intergenerational monitoring in this context raises unique ethical challenges, challenges that go beyond existing protocols and standards for human subjects research. These challenges will need to be addressed if clinical trials of germline gene editing are ever pursued. (shrink)

The two tragedies argument has been raised as a response to the argument against abortion from spontaneous abortion. According to this argument against the antiabortion position, miscarriages should be of great concern for proponents of this position since they result in a greater amount of deaths of human beings than induced abortions do. According to critics of AAP, this fact undermines its plausibility, since proponents of the AAP either must try to prevent miscarriages to the same extent as they try (...) to prevent abortions or abandon their opposition to at least some abortions—which are not acceptable options for proponents of APP. The claim of 2TA is that one can differentiate between induced abortion and miscarriages due to the fact that the former involves the act of killing of another human being. This fact adds a tragedy to the tragedy that both abortions and miscarriages result in – the death of a human being – and contributes to justifying the choice of proponents of AAP to prioritise the prevention of abortions rather than miscarriages. In this response, I defend 2TA against criticism that claims that this argument is: inconsistent with the AAP and trivialises the death of the fetus. My claim is that the first line of criticism rests on a misunderstanding of the premises of 2TA while the second line of criticism rests on a disanalogous thought experiment. I therefore conclude that these objections fail. (shrink)

In their paper Horton et al argue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Horton et al’s position that (...) it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Horton et al’s concerns but would not involve over-riding any previously expressed wishes. (shrink)

The UK’s 2014 Immigration Act aimed to create a ‘Hostile Environment’ for migrants to the UK. One aspect of this was the restriction of access to secondary care for overseas visitors to the UK, although it remains the case that everybody living in the UK has the legal right to access primary care. In this paper, we argue that the effects of this policy extend beyond secondary care, including preventing eligible people from registering with a General Practice, although as an (...) unintended consequence. This problem arises from misinterpretation of policy wording, misleading GP websites and gatekeeping behaviour from front-line staff, even though there are no grounds in the current guidelines or law to support this. Free access to primary healthcare among refugees and asylum seekers living in deprived populations is particularly important in protecting patient health, given the burden of ill-health in this population and the multiple barriers to accessing early intervention they face. The medical profession has a duty to communicate their rights to this patient group—their legal entitlement to access free healthcare, and the vital importance of doing so. (shrink)

In recent years, a plethora of high-profile scientific publications has been reporting about machine learning algorithms outperforming clinicians in medical diagnosis or treatment recommendations. This has spiked interest in deploying relevant algorithms with the aim of enhancing decision-making in healthcare. In this paper, we argue that instead of straightforwardly enhancing the decision-making capabilities of clinicians and healthcare institutions, deploying machines learning algorithms entails trade-offs at the epistemic and the normative level. Whereas involving machine learning might improve the accuracy of medical (...) diagnosis, it comes at the expense of opacity when trying to assess the reliability of given diagnosis. Drawing on literature in social epistemology and moral responsibility, we argue that the uncertainty in question potentially undermines the epistemic authority of clinicians. Furthermore, we elucidate potential pitfalls of involving machine learning in healthcare with respect to paternalism, moral responsibility and fairness. At last, we discuss how the deployment of machine learning algorithms might shift the evidentiary norms of medical diagnosis. In this regard, we hope to lay the grounds for further ethical reflection of the opportunities and pitfalls of machine learning for enhancing decision-making in healthcare. (shrink)

Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying (...) manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased. (shrink)

I defend a relational account of difference in the moral status between fetuses and newborns. The difference in moral status between a fetus and a newborn is that the newborn baby is the proper object of ‘parental responsibility’ whereas the fetus is not. ‘Parental responsibilities’ are a moral dimension of a ‘parent-child relation’, a relation which newborn babies stand in, but fetuses do not. I defend this relational account by analyzing the concepts of ‘parent’ and ‘child’, and conclude that the (...) difference in the moral status between fetuses and newborns means one may claim abortion is morally permissible while also claiming infanticide is not morally permissible, without inconsistency between the two claims. (shrink)

Modern antiretroviral therapies are capable of suppressing HIV in the bloodstream to undetectable levels. Nonetheless, people living with HIV must maintain lifelong adherence to ART to avoid the re-emergence of the infection. So despite the existence and efficacy of ART, there is still substantial interest in development of a cure. But HIV cure trials can be risky, their success is as of yet unlikely, and the medical gain of being cured is limited against a baseline of ART access. The medical (...) prospect associated with participation in cure research thus look poor. Are the risks and burdens that HIV cure research places on participants so high that it is unethical, at present, to conduct it? In this paper, I answer ‘no’. I start my argument by describing a foundational way of thinking about the ethical justification for regulatory limits on research risk; I then apply this way of thinking to HIV cure trials. In offering this analysis, I confine my attention to studies enrolling competent adults and I also do not consider risks research may pose to third parties or society. Rather, my concern is to engage with the thought that some trials are so risky that performing them is an ethically unacceptable way to treat the participants themselves. I reject this thought and instead argue that there is no level of risk, no matter how high, that inherently mistreats a participant. (shrink)

The Journal of Medical Ethics can sometimes read part Men Like Gods and part A Brave New World. At times, we learn how all controversies can resolved with reference to four principles. At other times, we learn how “every discovery in pure science is potentially subversive”.1 This issue is no exception. Here, we can read about the utopia of gene editing, manufactured organs, and machine learnt algorithmic decision-making. We can also read about the dystopia of inherited disorders from edited germlines, (...) the testing of xenotransplants on braindead patients, and misdiagnosis by artificial intelligence. What we see in the three papers that I will foreground here is the application of medical ethics to avoid the dystopia while preserving the promises of medical science. But as I seek to explain here, our ability to address the controversies that we anticipate in medical science depend on our ability to refine our understanding of what medical ethics requires of us now. From the diagnosis of eye diseases from fungus images to predicting the risk of imminent risk of suicide attempts, machine learnt medical decision making has, in some high profile instances, outperformed clinicians in medical diagnosis and treatment recommendations. While clinician and machine learnt diagnoses will both involve degrees of uncertainty and fallibility, Thomas Grote2 asks us to consider is how much weight a clinician ought to give an algorithmic diagnosis which she disagreements with. Since a clinician is held to account for …. (shrink)

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees (...) for Termination of Life on Request and Euthanasia and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)

The purpose of this paper is to propose a middle ground in the debate over religious exemptions from measles vaccination requirements. It attempts to strike a balance between public health concerns on the one hand and religious objections on the other that avoids two equally serious errors: making religious liberty an absolute and disregarding religious beliefs altogether. Some think that the issue is straightforward: science has spoken and the benefits to public health outweigh any other concerns. The safety of the (...) community, they say, demands that everybody be vaccinated so that measles outbreaks can be prevented, but such voices often ignore the freedom of religion, which is a mistake. Using Martha Nussbaum’s work on religious liberty, this paper claims that the exemptions should be preserved if a certain level of vaccination rates can be maintained. (shrink)

In February 2020, the British Medical Association will be surveying members for their views on what the BMA’s position on physician-assisted dying should be. The BMA is currently opposed to physician-assisted dying in all its forms, a position that was agreed in 2006 at the annual representative meeting, the Association’s policy-making conference.1 As previously reported in Ethics briefing,2 the decision to survey members follows a motion passed at last year’s ARM which called on the BMA to “carry out a poll (...) of members to ascertain their views on whether the BMA should adopt a neutral position with respect to a change in the law on assisted dying”. The results from the survey will not determine BMA policy. Rather, the results be published ahead of this year’s ARM and provided to those attending to inform a debate and discussion on the BMA’s policy position. More information about the survey, including a briefing pack of useful information, and information for BMA members on how to participate can be found online at www.bma.org.uk/PAD. ### High Court rejects Judicial reviews on assisted suicide The High Court has refused permission for two separate challenges to the law on assisted suicide in the UK to proceed to a full hearing. In the first case, Phil Newby, who has motor neuron disease, applied for judicial review of the law on assisted suicide and asked for the court to carry out a detailed examination of what he termed “legislative facts” – that is, an examination of the existing evidence on the “costs, risks and benefits” of regulating assisted suicide – including a cross-examination of relevant expert witnesses.1 Handing down the judgement, Lord Justice Irwin and Mrs Justice May, held that assisted dying …. (shrink)

Giulia Cavaliere disagrees with claims that ectogenesis will increase equality and freedom for women, arguing that they often ignore social context and consequently fail to recognise that ectogenesis may not benefit women or it may only benefit a small subset of already privileged women. In this commentary, I will contextualise her argument within the broader cultural milieu to highlight the pattern of reproductive advancements and technologies, such as egg freezing and birth control, being presented as the panacea for women’s inequality. (...) While these advancements and technologies can benefit women, I argue medicine is not the best tool to ‘cure’ social problems and should not be co-opted as an agent of social change. Systemic social changes, not just technomedical approaches, are needed to address the root of gender inequality, which is social in nature, not medical. (shrink)

The benefits of full ectogenesis, that is, the gestation of human fetuses outside the maternal womb, for women ground many contemporary authors’ arguments on the ethical desirability of this practice. In this paper, I present and assess two sets of arguments advanced in favour of ectogenesis: arguments stressing ectogenesis’ equality-promoting potential and arguments stressing its freedom-promoting potential. I argue that although successfully grounding a positive case for ectogenesis, these arguments have limitations in terms of their reach and scope. Concerning their (...) limited reach, I contend that ectogenesis will likely benefit a small subset of women and, arguably, not the group who most need to achieve equality and freedom. Concerning their limited scope, I contend that these defences do not pay sufficient attention to the context in which ectogenesis would be developed and that, as a result, they risk leaving the status quo unchanged. After providing examples of these limitations, I move to my proposal concerning the role of ectogenesis in promoting women’s equality and freedom. This proposal builds on Silvia Federici’s, Mariarosa Dalla Costa’s and Selma James’ readings of the international feminist campaign ‘Wages for Housework’. It maintains that the political perspective and provocation that ectogenesis can advance should be considered and defended. (shrink)

Let me begin by thanking the Journal of Medical Ethics editors and the four commentators for taking time to read, reflect and offer thoughtful comments on my paper. The issues they raise warrant careful attention. Regrettably, I am only able to address some of their key concerns due to space constraints. In my paper, ‘Gestation, Equality and Freedom: Ectogenesis as a Political Perspective’, I outline two sets of critiques of liberal defences of ectogenesis and contend that these defences are limited (...) in their reach and scope. Building on Federici’s,1 and Dalla Costa’s and James’2 readings of the of the international feminist campaign ‘Wages for Housework’, I argue that the value of ectogenesis is to similarly advance a political perspective and a provocation. Framing ectogenesis in these terms enables to critically engage with the physical and social burdens of pregnancy, childbirth and childrearing, which all too often are borne by women. It also allows to demand for better medical and social services for mothers and women more generally, as well as better working and living conditions for these and other disadvantaged groups. Lisa Campo-Engelstein thoughtfully broadens my reading of liberal defences of ectogenesis and contextualises them within the history of ‘reproductive advancements and technologies’.3 She illustrates that …. (shrink)

It is a pleasure to comment on Giulia Cavaliere’s ‘ Gestation, Equality and Freedom: Ectogenesis as a Political Perspective’ in what one might say is ‘enthusiastic disagreement’. The enthusiastic part is because the article is deserving of much praise for adding an important feminist and political theoretical perspective on ectogenesis. The disagreement may come more from disciplinary differences or disposition. As I understand her argument, Cavaliere intends to attack two common arguments in favour of research into ectogenesis—that is, gestation of (...) a human fetus outside the womb—one that sounds in the potential of the technology to promote equality, the other that it has the potential to promote liberty. On the first her critique is that the risks and burdens of gestation for women are most pronounced for the worst off, but ectogenesis is unlikely to be used by them. On the second her critique is, i nter alia, that treating ‘ectogenesis as a means to address workplace inequalities calls for solutions that change the way society reproduces itself rather than a labour market …. (shrink)

In this paper, we argue that there are important ethical questions about healthcare improvement which are underexplored. We start by drawing on two existing literatures: first, the prevailing, primarily governance-oriented, application of ethics to healthcare ‘quality improvement’, and second, the application of QI to healthcare ethics. We show that these are insufficient for ethical analysis of healthcare improvement. In pursuit of a broader agenda for an ethics of healthcare improvement, we note that QI and ethics can, in some respects, be (...) treated as closely related concerns and not simply as externally related agendas. To support our argument, we explore the gap between ‘quality’ and ‘ethics’ discourses and ask about the possible differences between ‘good quality healthcare’ and ‘good healthcare’. We suggest that the word ‘quality’ both adds to and subtracts from the idea of ‘good healthcare’, and in particular that the technicist inflection of quality discourses needs to be set in the context of broader conceptualisations of healthcare improvement. We introduce the distinction between quality as a measurable property and quality as an evaluative judgement, suggesting that a core, but neglected, question for an ethics of healthcare improvement is striking the balance between these two conceptions of quality. (shrink)

Should we use human germline genome modification only when serious diseases are involved? This belief is the underlying factor in the article written by Kleiderman, Ravitsky and Knoppers to which I now respond. In my opinion, the answer to this question should be negative. In this paper, I attempt to show that there are no good reasons to think that this technology should be limited to serious diseases once it is sufficiently proven to be safe and efficient. In fact, opting (...) otherwise would negatively harm human beings’ right to the highest standard of health that unmodified embryos could promote. Therefore, the issue should not be so much to define adequately what a serious disease is, but rather to elucidate whether this concept should play any role beyond the context of preimplantation genetic testing. This paper argues that we should not accept the similarity between technologies such as PGT and HGGM because they face different challenges and offer totally different possibilities. Therefore, we are in urgent need to build a completely new ethical architecture that covers the application of germline editing in human embryos. As a part of that process, a much deeper debate on the necessity of distinguishing different disease types is required. (shrink)

Many patients believe that cardiopulmonary resuscitation is more likely to be successful than it really is in clinical practice. Even when working with accurate information, some nevertheless remain resolute in demanding maximal treatment. They maintain that even if survival after cardiac arrest with CPR is extremely low, the fact remains that it is still greater than the probability of survival after cardiac arrest without CPR. Without realising it, this line of reasoning is strikingly similar to Pascal’s Wager, a Renaissance-era argument (...) for accepting the proposition for God’s existence. But while the original argument is quite logical—if not universally compelling—the modern variant makes several erroneous assumptions. The authors here present a case of a patient who unwittingly appeals to Pascal’s Wager to explain his request for maximal treatment, in order to highlight the crucial divergences from the original Wager. In understanding the faulty assumptions inherent in the application of Pascal’s Wager to code status decisions—and identifying the underlying motivations which the Wager serves to confirm—providers can better ensure that the true values and preferences of patients are upheld. (shrink)

Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one’s conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus far is (...) a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged. (shrink)

We can imagine a world in which ectogenesis provides a safe gestating space that eliminates maternal morbidity and mortality while maximising healthy outcomes for babies. In this world, women, no longer physically—and visibly—pregnant, are no longer economically, socially or physically disadvantaged due to the potential for pregnancy and birth. Because everyone can access the same technology, women are able to work without fear of pregnancy-related discrimination or restrictions, and health disparities among individuals in gestation and birth based on socioeconomic status (...) are eliminated. This imagining allows us to explore the ethical and social underpinnings of such a world, and consider how to achieve it in our current paradigm. Having explored the freedom and equality that is possible in an ideal hypothetical where all have equal access to such technologies, we can now imagine that same world without ectogenesis: women, no longer economically, socially or physically disadvantaged due to pregnancy and birth, despite still becoming pregnant. Such is the potential political perspective and provocation that can be spurred on by discussion of ectogenesis. As Cavaliere argues, the technological reality of ectogenesis may not achieve the freedom and equality that …. (shrink)

In their paper ‘The “serious” factor in germline modification’, Kleiderman, Ravitsky and Knoppers rightly highlight the ambiguity in the oft-utilised term ‘serious’ in legal discussions of human germline genome modification.1 They suggest interpretation of this term may benefit from a framework based on human rights rather than solely objectivist or constructivist frameworks. In this response, I show the authors provide a narrow and hasty dismissal of objectivist frameworks by defining objectivism broadly as ‘based on biological facts’ early on but later (...) criticising genetic treatment lists, a single narrow implementation of only some of the facts. Furthermore, I will show their consideration of the right to science is biassed towards the material innovations of science, the authors succeed in recognising but fail in elaborating on the knowledge gained from scientific progress; knowledge which may ultimately update moral intuitions and change the nature of ethical conversation across cultures. (shrink)

In this reply, we wish to defend our original position and address several of the points raised by two excellent responses. The first response questions the relevance of the notion of ‘serious’ within the context of human germline genome modification. We argue that the ‘serious’ factor is relevant and that there is a need for medical and social lenses to delineate the limits of acceptability and initial permissible applications of HGGM. In this way, ‘serious’ acts as a starting point for (...) further discussions and debates on the acceptability of the potential clinical translation of HGGM. Therefore, there is a pressing need to clarify its scope, from a regulatory perspective, so as to prevent individuals from using HGGM for non-therapeutic or enhancement purposes. The second response criticizes the narrow interpretation of the objectivist approach and the apparent bias towards material innovations when discussing the right to benefit from scientific advancements. As an in-depth discussion of the objectivist and constructivist approaches was beyond the scope of our original paper, we chose to focus on one specific objectivist account, one which focuses on biological and scientific facts. We agree, however, with the critique that material innovations should not be the sole focus of the right to benefit from scientific advancements, which also incorporates freedom of scientific research and access to scientific knowledge scientific freedom and knowledge, including the influence of these on ethical thinking and cultures. (shrink)

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures (...) as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised. (shrink)

BackgroundCase consultation performed by clinical ethics committees is a complex activity which should be evaluated. Several evaluation studies have reported stakeholder satisfaction in single institutions. The present study was conducted nationwide and compares clinicians’ evaluations on a range of aspects with the CEC’s own evaluation.MethodsProspective questionnaire study involving case consultations at 19 Norwegian CECs for 1 year, where consultations were evaluated by CECs and clinicians who had participated.ResultsEvaluations of 64 case consultations were received. Cases were complex with multiple ethical problems (...) intertwined. Clinicians rated the average CEC consult highly, being both satisfied with the process and perceiving it to be useful across a number of aspects. CEC evaluations corresponded well with those of clinicians in a large majority of cases. Having next of kin/patients present was experienced as predominantly positive, though practised by only half of the CECs. The educational function of the consult was evaluated more positively when the CEC used a systematic deliberation method.ConclusionsCEC case consultation was found to be a useful service. The study is also a favourable evaluation of the Norwegian CEC system, implying that it is feasible to implement well-functioning CECs on a large scale. There are good reasons to involve the stakeholders in the consultations as a main rule. (shrink)

The Journal of Medical Ethics has published a few papers over recent years that explore the ethical implications of ectogenesis.1–4 It is an as yet undeveloped but theoretically possible method by which a fetus can be gestated outside of the womb, and while the prospects of ‘full’ ectogenesis seem some way off, there are techniques that suggest ‘partial’ ectogenesis could be closer. This issue’s Feature Article considers two of the principal arguments that have been developed in favour of ectogenesis being (...) permissible and available.5 Cavaliere observes that the equality and freedom promoting aspects of ectogenesis will only benefit a small number of women, and she argues that it’s the broader political perspective ectogenesis advances that’s valuable. By equality she has in mind the workplace, the burdens of bearing, as well as equality among fertile, infertile, trans and lesbian women. In this context, …. (shrink)

When an individual is comatose while parts of her brain remain functional, the question arises as to whether any mental characteristics are still associated with this brain, that is, whether the person still exists. Settling this uncertainty requires that one becomes clear about two issues: the type of functional loss that is associated with the respective profile of brain damage and the persistence conditions of persons. Medical case studies can answer the former question, but they are not concerned with the (...) latter. Conversely, in the philosophical literature, various accounts of personal identity are discussed, but usually detached from any empirical basis. Only uniting the two debates and interpreting the real-life configurations of brain damage through the lens of the philosophical concepts enables one to make an informed judgment regarding the persistence of comatose persons. Especially challenging are cases in which three mental characteristics that normally occur together—wakefulness, awareness and memory storage—come apart. These shall be the focus of this paper. (shrink)

Detection of genetic aberrations in prenatal samples, obtained through amniocentesis or chorion villus biopsy, is increasingly performed using chromosomal microarray, a technique that can uncover both aneuploidies and copy number variants throughout the genome. Despite the obvious benefits of CMA, the decision on implementing the technology is complicated by ethical issues concerning variant interpretation and reporting. In Belgium, uniform guidelines were composed and a shared database for prenatal CMA findings was established. This Belgian approach sparks discussion: it is evidence-based, prevents (...) inconsistencies and avoids parental anxiety, but can be considered paternalistic. Here, we reflect on the cultural and moral bases of the Belgian reporting system of prenatally detected variants. (shrink)

In this article, we perform a thought experiment about living donor kidney transplantation. If a living kidney donor becomes in need of renal replacement treatment due to dysfunction of the remaining kidney after donation, can the donor ask the recipient to give back the kidney that had been donated? We call this problem organ restitution and discussed it from the ethical viewpoint. Living organ transplantation is a kind of ‘designated donation’ and subsequently has a contract-like character. First, assuming a case (...) in which original donor wishes the return of the organ which had been transplanted into B, and the original recipient agrees, organ restitution will be permissible based on contract-like agreement. However, careful and detailed consideration is necessary to determine whether this leaves no room to question the authenticity of B’s consent. Second, if B offers to give back the organ to A, then B’s act is a supererogatory act, and is praiseworthy and meritorious. Such an offer is a matter of virtue, not obligation. Third, if A wishes B to return the organ, but B does not wish/allow this to happen, it is likely difficult to justify returning the organ to A by violating B’s right to bodily integrity. But B’s refusal to return the donated organ cannot be deemed praiseworthy, because B forgets the great kindness once received from A. Rather than calling this an obligation, we encourage B to consider such virtuous conduct. (shrink)

In this commentary, I consider how Giulia Cavaliere’s arguments about the limited reach of the current justifications offered for full ectogenesis in the bioethical literature apply in the context of partial ectogenesis. I suggest that considering the extent to which partial ectogenesis is freedom or equality promoting is more urgent because of the more realistic prospect of artificial womb technology being utilised to facilitate partial gestation extra uterum as opposed to facilitating complete gestation from conception to term. I highlight concerns (...) about potentially harmful social narratives surrounding pregnancy and about the current legal framework surrounding gestation limiting access to technology in the advent of partial ectogenesis. I do not advocate that these concerns mean that we ought not develop artificial wombs, but like Cavaliere I suggest that we must be mindful of these concerns, and I posit that legal reform must accompany technological developments. Ectogenesis as a political perspective, through which we consider the value in social reproduction and the experiences of pregnant people, is useful to prevent political capture of this technology for regressive policies. Using this perspective to examine the law is also a useful tool to expose just how restrictive the law is in relation to gestation and female reproductive health. (shrink)

The contemporary philosophical literature on abortion primarily revolves around three seemingly intractable debates, concerning the moral status of the fetus, scope of women’s rights and moral relevance of the killing/letting die distinction. The possibility of ectogenesis—technology that would allow a fetus to develop outside of a gestational mother’s womb—presents a unique opportunity for moral compromise. Here, I argue those opposed to abortion have a prima facie moral obligation to pursue ectogenesis technology and provide ectogenesis for disconnected fetuses as part of (...) a moral compromise. (shrink)

Different embodiments of technology permeate all layers of public and private domains in society. In the public domain of aged care, attention is increasingly focused on the use of socially assistive robots supporting caregivers and older adults to guarantee that older adults receive care. The introduction of SARs in aged-care contexts is joint by intensive empirical and philosophical research. Although these efforts merit praise, current empirical and philosophical research are still too far separated. Strengthening the connection between these two fields (...) is crucial to have a full understanding of the ethical impact of these technological artefacts. To bridge this gap, we propose a philosophical-ethical framework for SAR use, one that is grounded in the dialogue between empirical-ethical knowledge about and philosophical-ethical reflection on SAR use. We highlight the importance of considering the intuitions of older adults and their caregivers in this framework. Grounding philosophical-ethical reflection in these intuitions opens the ethics of SAR use in aged care to its own socio-historical contextualisation. Referring to the work of Margaret Urban Walker, Joan Tronto and Andrew Feenberg, it is argued that this socio-historical contextualisation of the ethics of SAR use already has strong philosophical underpinnings. Moreover, this contextualisation enables us to formulate a rudimentary decision-making process about SAR use in aged care which rests on three pillars: stakeholders’ intuitions about SAR use as sources of knowledge; interpretative dialogues as democratic spaces to discuss the ethics of SAR use; the concretisation of ethics in SAR use. (shrink)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts. We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

Many supporters of ‘moral bioenhancement’, the use of biomedical interventions for moral improvement, have been criticised for having unrealistic proposals. The interventions they suggest have often been called infeasible and their implementation plans vague or unethical. I dispute these criticisms by showing that various interventions to implement MBE are practically and ethically feasible enough to warrant serious consideration. Such interventions include transcranial direct current stimulation over the medial and dorsolateral prefrontal cortex, as well as supplementation with lithium and omega-3. Considering (...) their efficacy and feasibility, it is strange that these interventions have rarely been proposed or discussed as MBE. I review evidence that each of those interventions can reduce antisocial behaviour, reduce racial bias, increase executive function or increase prosocial traits like fairness and altruism. I then specify and defend realistic, ethically permissible ways to implement these interventions, especially for violent offenders and public servants—the former as rehabilitation and the latter to meet the high standards of their occupations. These interventions could be given to violent offenders in exchange for a reduced sentence or compulsorily in some cases. Potential intervention methods for non-prisoners include increasing the USDA-recommended dose of omega-3, encouraging food companies to supplement their products with omega-3 or trace lithium, requiring MBE for employment as a police officer or political leader, and insurance companies providing discounts for undergoing MBE. In some reasonably limited form, using these interventions may be a good first step to implement the project of MBE. (shrink)

In their summary and critique, Gamble, Gamble, and Pruski mischaracterise both the central arguments and the primary objectives of our original paper. Our paper does not provide an ethical justification for paediatric Medical Assistance in Dying by comparing it with other end of life care options. In fact, it does not offer arguments about the permissibility of MAID for capable young people at all. Instead, our paper focuses on the ethical questions that emerged as we worked to develop a policy (...) for responding to MAID requests at our tertiary paediatric institution. Following the Supreme Court of Canada’s recent decriminalisation of MAID, our hospital needed to answer immediate on-the-ground questions such as: ‘What are we going to do if an 18-year-old patient in our care requested MAID today, as is now their legal right? How should we protect their privacy? What is the best way to ensure patients are informed when making these decisions?’ On these important questions, Gamble, Gamble, and Pruskiare silent. (shrink)

This post-holiday edition of the JME brings together a number of papers, covering a range of methodologies, surveys on public opinion, the application of developmental neuroscience, comparative risk/benefit questionnaires, scoping reviews and analysis of guidance and health policy, alongside what might be seen as more traditional medical ethics, analysing concepts and advancing arguments. This range of methodologies is suggestive of the kind of discipline that bioethics has become, and how a wealth of disciplinary and methodological perspectives is needed to address (...) the numerous challenges that face modern health systems. The Editors’ Choice article by Derbyshire and Brockman1 considers the contentious issue of fetal pain, and applies developmental neuroscience to the question of at what stage, if at all, a fetus can feel pain? The authors argue that new evidence suggests we cannot rule out that foetuses might experience pain before 24 weeks. The authors define pain as being ‘a raw experience’ and therefore, ‘the ability to feel pain does not have to be premised on self-reflection, which prevents a rejection of fetal pain because the fetal experience is not equivalent to an adult human experience.’1 Hence, for the authors, pain does not have to be equivalent to adult pain to matter morally. The authors have differing views on abortion and this provokes a thoughtful discussion, in terms of what are the implications of these, although tentative, conclusions on fetal pain for practical approaches to carrying out abortions. They conclude by exploring how abortions might be carried out in a more humane way, that is, using fetal analgesia, and what such a humane approach might look like in light of this new evidence. In this month’s feature article Brick and colleagues2 report on a study that surveyed a sample of the UK population on their views on allowing …. (shrink)

In a recent article, 1 Riisfeldt attempts to show that the principle of double effect is unsound as an ethical principle and problematic in its application to palliative opioid and sedative use in end-of-life care. Specifically, he claims that routine, non-lethal opioid and sedative administration may be “intrinsically bad” by PDE’s standards, continuous deep palliative sedation should be treated as a bad effect akin to death for purposes of PDE, PDE cannot coherently be applied in cases where death “indirectly” furthers (...) an agent’s intended end of pain relief via medically appropriate palliative care, and application of PDE requires sacrificing common beliefs about the sanctity of human life. I respond by showing that Riisfeldt’s understanding of PDE is seriously mistaken: he misattributes Kantian and Millian reasoning to the principle and conflates acts’ intrinsic properties with their effects. Further, a corrected understanding of PDE can address Riisfeldt’s case-specific objections. (shrink)

As a neonatal neurologist, I serve families facing tragic decisions in which they must balance trade-offs between death and life with profound disability. I often find myself in complex discussions about future outcome, in which families sort through in real-time what information they value most in making such a choice. Will he laugh? Will he be in pain? Will he know how much he’s loved? In this month’s feature article, Brick et al share the results of an online survey aimed (...) at assessing public views on when a life is not worth living, in an effort to inform ongoing legal and clinical debates about withdrawal of life-sustaining treatment for children. These findings raise important questions about how we define and measure outcomes that matter to parents as they make these tragic decisions. It is challenging to interpret these findings in the absence of context of how decision-making for infants occurs in real-time. The nature of this study and its objective required that cases be substantially simplified. As the authors acknowledge, the prognoses and function of the children involved in these cases were often deeply contested. Prognostic uncertainty is common for children with significant …. (shrink)

This article is a response to Thomas David Riisfeldt’s paper entitled ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’. It is shown that as far as euthanasia and palliative sedation are concerned, Riisfeldt has not established that a common ground, or a similarity, between the two is the relief of suffering. Quite the contrary, this is not characteristic of euthanasia, neither by definition nor from a clinical point of view. Hence, the argument hinges on a conceptually (...) and empirically erroneous premise and is accordingly a non-starter. (shrink)

Work done within the realm of what is sometimes called ‘descriptive ethics’ brings two questions readily to mind: How can empirical findings, in general, inform normative debates? and How can these empirical findings, in particular, inform the normative debate at hand? Brick et al 1 confront these questions in their novel investigation of public views about lives worth living and the permissibility of withdrawing life-sustaining treatment from critically ill infants. Mindful of the is-ought gap, the authors suggest modestly that their (...) data ‘may be useful when constructing guidelines for clinical practice’. In this commentary, I consider some potential limitations on the generalisability of these data in the context of policy and clinical practice, limitations which may in turn serve as directions for future empirical research. The authors’ study presented participants six case scenarios, five of which involved the possibility of withdrawing life-sustaining treatment from critically ill infants. The results revealed that “[a]lmost all respondents agreed that at some level of quality of life, life may be of no benefit or worse than death for an infant” and that “participants significantly favoured withdrawal of treatment for the most severe cases.” One salient detail in these scenarios …. (shrink)

IntroductionClinical ethics committees support and enhance communication and complex decision making, educate healthcare professionals and the public on ethical matters and maintain standards of care. However, a consistent approach to training members of CECs is lacking. A systematic scoping review was conducted to evaluate prevailing CEC training curricula to guide the design of an evidence-based approach.MethodsArksey and O’Malley’s methodological framework for conducting scoping reviews was used to evaluate prevailing accounts of CEC training published in six databases. Braun and Clarke’s thematic (...) analysis approach was adopted to thematically analyse data across different healthcare and educational settings.Results7370 abstracts were identified, 92 full-text articles were reviewed and 55 articles were thematically analysed to reveal four themes: the design, pedagogy, content and assessment of CEC curricula.ConclusionFew curricula employ consistent approaches to training. Many programmes fail to provide CEC trainees with sufficient knowledge, skills and experience to meet required competencies. Most programmes do not inculcate prevailing sociocultural, research, clinical and educational considerations into training processes nor provide longitudinal support for CEC trainees. Most CEC training programmes are not supported by host institutions threatening the sustainability of the programme and compromising effective assessment and longitudinal support of CEC trainees. While further reviews are required, this review underlines the need for host organisations to support and oversee a socioculturally appropriate ethically sensitive, clinically relevant longitudinal training, assessment and support process for CEC trainees if CECs are to meet their roles effectively. (shrink)

My essay ‘Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation’ has recently generated some critique which I will attempt to address in this response. Regarding the empirical question of whether palliative opioid and sedative use shorten survival time, Schofield et al raise the three concerns that my literature review contains a cherry-picking bias through focusing solely on the palliative care population, that continuous deep palliative sedation falls beyond the scope of routine palliative care, and that my (...) research may contribute to opiophobia and be harmful to palliative care provision globally. Materstvedt argues that euthanasia ‘ends’ rather than ‘relieves’ suffering and is not a treatment, and that the arguments in my essay are therefore predicated on a ‘category mistake’ and are a non-starter. Symons and Giebel both raise the concern that my Kantian and Millian interpretation of the Doctrine of Double Effect is anachronistic, and that when interpreted from the contemporaneous perspective of Aquinas it is a sound ethical principle. Giebel also argues that palliative opioid and sedative use do meet the Doctrine of Double Effect’s four criteria on this Thomistic account, and that it does not contradict the Doctrine of the Sanctity of Human Life. In this response I will explore and defend against most of these claims, in doing so clarifying my original argument that the empirical and ethical differences between palliative opioid/sedative use and euthanasia may not be as significant as often believed, thereby advancing the case for euthanasia. (shrink)

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper’s conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid analgesia. (...) Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt’s headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice. (shrink)

Thomas Riisfeldt’s essay1 is a valuable contribution to the literature on palliative sedation, appropriately titrated administration of opioids and euthanasia. In this response, I will not deal with the author’s empirical claim about the relationship between opioid use, palliative sedation and survival time. Rather, I will briefly critique the author’s discussion of doctrine of double effect and its application to palliative sedation and opioid use at the end of life. That is, I will focus on the ethical claims made by (...) the author. Riisfeldt argues that DDE is incompatible with both Kantian deontology and Millian consequentialism. Yet, I will argue that the DDE is coherent and defensible when interpreted from the perspective of the philosophy of Thomas Aquinas, the theorist who first proposed the doctrine. I will also argue that Riisfeldt mischaracterises ATAOs and palliative sedation as procedures that hasten death as a means to relieve pain. While death may indeed be hastened by ATAOs and palliative sedation, it is not at all clear that clinicians intend to hasten death as a means to relieve pain. Indeed, clinical guidelines explicitly prohibit the intentional hastening of death. Riisfeldt provides a brief summary of the DDE. He describes DDE as a ‘strange hybrid of four principles’. He lists the four criteria that must be met for an act with a good and a bad effect to be permissible. These criteria are the ‘intention and means criteria’ and the ‘intrinsic and proportionality criteria’. The author uses Kant and Mill as lens through which to highlight a tension between the intrinsic and proportionality criteria of DDE. The author claims that ‘the intrinsic criterion is derived from deontology, the predominant form of which is championed by Kant’, and that ‘the proportionality criterion is derived from consequentialism, the predominant form of …. (shrink)

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how the USA (...) and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children. (shrink)

Moodley and Rennie’s paper arguing against penile transplantation stated out of context arguments and wrongly quoted statements. The cost of penile transplantation is much less than portrayed. The burden of cases is much less than is communicated. The men on our penis transplantation programme represent the poorest of the poor and are one of the most discriminated against groups of humans on earth. The false hope said to be created by Moodley is indeed not false hope at all as there (...) is a real possibility that most patients on our waiting list may be transplanted. Moodley argues that government has, in the context of penile transplantation, no duty to cure those who lost a penis after ritual circumcision, but only an obligation to prevent this from happening. A ‘yuk’ reaction, similarly described in facial transplantation, may be present in colleagues arguing against penile transplantation. (shrink)

In a recent issue of Journal of Medical Ethics, we discussed the ethical review of evaluations of interventions that would occur whether or not the evaluation was taking place. We concluded that standard research ethics frameworks including the Ottawa Statement, which requires justification for all aspects of an intervention and its roll-out, were a poor guide in this area. We proposed that a consideration of researcher responsibility, based on the consequences of the research taking place, would be a more appropriate (...) way delineate the scope of research ethics review. Weijer and Taljaard present a counterargument to our proposal, which we address in this reply. They claim that a focus on researcher responsibility will weaken the protection of research participants and link it to ‘unethical research’ and a ‘government experimenting on its own people’. However, the moral responsibility of researchers is defined in terms of the consequences of the research on human welfare and harm, not in opposition to it. Weijer and Taljaard argue that researchers must justify what they are studying whether or not they have any control over it and that governments must justify their programmes, including by demonstrating equipoise, to a research ethics committee if they implement them in a randomised way. We strongly disagree that this is a defensible way to define the scope of research ethics review and argue that this provides no further protections to research participants beyond what we propose, but places a potential barrier to learning from government programmes. (shrink)

Public health and service delivery programmes, interventions and policies are typically developed and implemented for the primary purpose of effecting change rather than generating knowledge. Nonetheless, evaluations of these programmes may produce valuable learning that helps determine effectiveness and costs as well as informing design and implementation of future programmes. Such studies might be termed ‘opportunistic evaluations’, since they are responsive to emergent opportunities rather than being studies of interventions that are initiated or designed by researchers. However, current ethical guidance (...) and registration procedures make little allowance for scenarios where researchers have played no role in the development or implementation of a programme, but nevertheless plan to conduct a prospective evaluation. We explore the limitations of the guidance and procedures with respect to opportunistic evaluations, providing a number of examples. We propose that one key missing distinction in current guidance is moral responsibility: researchers can only be held accountable for those aspects of a study over which they have control. We argue that requiring researchers to justify an intervention, programme or policy that would occur regardless of their involvement prevents or hinders research in the public interest without providing any further protections to research participants. We recommend that trial consent and ethics procedures allow for a clear separation of responsibilities for the intervention and the evaluation. (shrink)

In this issue of JME, Watson et al call for research evaluation of government health programmes and identify ethical guidance, including the Ottawa Statement on the ethical design and conduct of cluster randomised trials, as a hindrance. While cluster randomised trials of health programmes as a whole should be evaluated by research ethics committees, Watson et al argue that the health programme per se is not within the researcher’s control or responsibility and, thus, is out of scope for ethics review. (...) We argue that this view is wrong. The scope of research ethics review is not defined by researcher control or responsibility, but rather by the protection of research participants. And the randomised evaluation of health programmes impacts the liberty and welfare interests of participants insofar as they may be exposed to a harmful programme or denied access to a beneficial one. Further, Watson et al’s claim that ‘study programmes … would occur whether or not there were any … research activities’ is incorrect in the case of cluster randomised designs. In a cluster randomised trial, the government does not implement a programme as usual. Rather, researchers collaborate with the government to randomise clusters to intervention or control conditions in order to rigorously evaluate the programme. As a result, equipoise issues are triggered that must be addressed by the REC. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public (...) policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high, use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey (...) findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2 In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of two commentators that the presence or absence of “relational potential” might be ethically important to report in studies of the outcome of severely impaired infants,3 and to whether parental requests for treatment should be supported.4 The notion of “relational potential” was introduced by John Arras in a 1984 commentary.5 Arras was responding to the Baby Doe Regulations and a …. (shrink)

Unlike its friendly cousin the placebo effect, the nocebo effect (the effect of expecting a negative outcome) has been almost ignored. Epistemic and ethical confusions related to its existence have gone all but unnoticed. Contrary to what is often asserted, adverse events following from taking placebo interventions are not necessarily nocebo effects; they could have arisen due to natural history. Meanwhile, ethical informed consent (in clinical trials and clinical practice) has centred almost exclusively on the need to inform patients about (...) intervention risks with patients to preserve their autonomy. Researchers have failed to consider the harm caused by the way in which the information is conveyed. In this paper, I argue that the magnitude of nocebo effects must be measured using control groups consisting of untreated patients. And, because the nocebo effect can produce harm, the principle of non-maleficence must be taken into account alongside autonomy when obtaining (ethical) informed consent and communicating intervention risks with patients. (shrink)

Conscientious objection in healthcare has come under heavy criticism on two grounds recently, particularly regarding abortion provision. First, critics claim conscientious objection involves a refusal to provide a legal and beneficial procedure requested by a patient, denying them access to healthcare. Second, they argue the exercise of conscientious objection is based on unverifiable personal beliefs. These characteristics, it is claimed, disqualify conscientious objection in healthcare. Here, we defend conscientious objection in the context of abortion provision. We show that abortion has (...) a dubitable claim to be medically beneficial, is rarely clinically indicated, and that conscientious objections should be accepted in these circumstances. We also show that reliance on personal beliefs is difficult to avoid if any form of objection is to be permitted, even if it is based on criteria such as the principles and values of the profession or the scope of professional practice. (shrink)

Prabhpal Singh has recently defended a relational account of the difference in moral status between fetuses and newborns as a way of explaining why abortion is permissible and infanticide is not. He claims that only a newborn can stand in a parent–child relation, not a fetus, and this relation has a moral dimension that bestows moral value. We challenge Singh’s reasoning, arguing that the case he presents is unconvincing. We suggest that the parent–child relation is better understood as an extension (...) of an existing relationship formed during the gestational period. The change in this relation at birth is not sufficient to justify the radical change in moral status required to rule out infanticide while accepting the permissibility of abortion. Given that the moral status of orphans is also problematic under Singh’s account, we conclude that Singh has not shown that a newborn has greater moral worth than a fetus. (shrink)

A new argument has been made against moral enhancement by authors who are otherwise in favour of human enhancement. Additionally, they share the same evolutionary toolkit for analysing human traits as well as the belief that our current morality is unfit to deal with modern problems, such as climate change and nuclear proliferation. The argument is put forward by Buchanan and Powell and states that other paths to moral progress are enough to deal with these problems. Given the likely costs (...) and risks involved with developing moral enhancement, this argument implies moral enhancement is an unpromising enterprise. After mentioning proposed solutions to such modern problems, I will argue that moral enhancement would help implement any of them. I will then detail Buchanan and Powell’s new argument disfavouring moral enhancement and argue that it makes too bold assumptions about the efficacy of traditional moral progress. For instance, it overlooks how that progress was to achieve even in relatively successful cases such as the abolition of slavery. Traditional moral progress is likely to require assistance from non-traditional means in order to face new challenges. (shrink)

In this paper, I respond to criticisms toward my account of the difference in moral status between fetuses and newborns. I show my critics have not adequately argued for their view that pregnant women participate in a parent-child relationship. While an important counterexample is raised against my account, this counterexample had already been dealt with in my original paper. Because the criticisms against my account lack argumentative support, they do not pose a problem for my account. I conclude the raised (...) criticisms do not amount to a strong philosophical case against my account. (shrink)