The integrity of the patient–physician relationship depends on maintaining professional boundaries. While ethicists and professional organisations have devoted significant consideration to the subject of sexual boundary transgressions, the subject of non-sexual boundaries, especially outside the mental health setting, has been largely neglected. While professional organisations may offer guidance on specific subjects, such as accepting gifts or treating relatives, as well as general guidance on transparency and conflict of interest, what is missing is a principle-based method that providers can use to (...) assess non-sexual interactions with patients that transcend norms of practice. This paper attempts to offer an operational model for such assessment that considers not only the traditional emphasis on beneficence, but also incorporates concerns over entanglement and concordance. (shrink)

Dominic Wilkinson’s defence of identity-relative paternalism raises many important issues that are well worth considering. In this short paper, I will argue that there could be two important differences between the first-party and third-party cases that Wilkinson discusses, namely, a difference in associative duties and how the decision relates to the decision maker’s own autonomous life. This could mean that identity-relative paternalism is impermissible in a greater number of cases than he suggests.

In a recent article, Wilkinson puts forward the notion of identity-relative paternalism. According to Wilkinson’s final formulation of this principle, ‘[i]ndividuals should be prevented from doing to future selves (where there are weakened prudential unity relations between the current and future self) what it would be justified to prevent them from doing to others’.1 In medical ethics, it is usually assumed that hard paternalism, that is, acting against a competent person’s wishes for their own benefit, is not justified. According to (...) Mill’s harm principle, we may only limit people’s freedom if they cause harm to others.2 Harm to self is not a sufficient reason for overriding competent persons’ decisions. Wilkinson, however, draws on Parfit’s reductionist view of personal identity to argue that sometimes, patients’ future selves are sufficiently disconnected from their present selves to treat future selves like different persons. If a competent person’s medical decision negatively affects a future self, this should be treated like a case of harm to others. Thus, overriding competent persons’ decisions in such cases—and treating them against their will—could be justified. In this commentary, I point out two problems with this approach. First, I demonstrate that the cases Wilkinson’s argument is based on are not examples of harm to others but rather cases of surrogate decision making gone wrong, …. (shrink)

Chronic diseases are the main disease burden worldwide, leading to premature deaths and poor individual and population health outcomes. Although modern medicine has made significant progress in developing effective treatments, only around 50% of people follow long-term treatment recommendations in high-income countries and presumably even less in low-income and middle-income countries.1 Health outcomes for chronic diseases follow a social gradient across socioeconomic groups, suggesting that the 50% adherence rate distributes unequally across social groups, affecting those who live in disadvantage the (...) most despite universal health coverage.2 Bioethicists have largely ignored inequalities that arise from differences in adherence to long-term treatments and the importance of the ethical dimension of chronicity for clinical practice. As I discuss in detail elsewhere, the concept of ‘chronic disease’ lacks a successful and agreed definition, failing to be structured in a traditional way and allowing for a disjunctive group of diseases to fall under the concept.3 Still, the main element that helps distinguish ‘chronic diseases’ from all other diseases is their long duration, so the noun chronicity can help demarcate and identify the nature of ‘chronic disease’. Drawing on conceptual analysis and phenomenological research on illness that highlight the tension between the cyclical and static elements of chronic disease, I have argued that chronicity has a phenomenological sense beyond its …. (shrink)

In The Harm Principle, Personal Identity and Identity-Relative Paternalism,1 Wilkinson offers a thoughtful argument about medical decision-making and Derek Parfit’s reductionist account of personal identity. I agree that Parfit’s account can contribute to the ethical analysis of patients’ choices. My own work in this area emphasises challenges the reductionist account presents to conventional understanding of advance treatment directives, particularly in cases involving people with dementia.2 I have also urged people making directives to consider the harm their directives could impose on (...) future selves with dementia.3 But as Wilkinson points out, Parfit’s account has implications in other medical contexts as well. Wilkinson presents examples of people making medical decisions that could impose serious harm on their future selves. These examples consider decisions made before a health crisis. Another kind of case involves people in the midst of illness who face a series of ongoing care choices. As people in this situation adjust to their …. (shrink)

The COVID-19 pandemic has exacerbated the drug poisoning epidemic in a number of ways: individuals use alone more often, there is decreased access to harm reduction services and there has been an increase in the toxicity of the unregulated drug supply. In response to the crisis, clinicians, policy makers and people who use drugs have been seeking ways to prevent the worst harms of unregulated opioid use. One prominent idea is safe supply. One form of safe supply enlists clinicians to (...) prescribe opioids so that people have access to drugs of known composition and strength. In this paper, we assess the ethical case for clinicians providing this service. As we describe, there is much that is unknown about safe supply. However, given the seriousness of the overdose death epidemic and the current limited evidence for safe supply’s efficacy, we argue that it is ethically permissible for clinicians to begin prescribing opioids for some select patients. (shrink)

Arguably one of the strengths of the discipline of medical ethics is its close attention to the context in which ethical dilemmas, questions and issues play out. As a discipline that is concerned with helping and supporting practitioners, policy-makers and the public to address the ethical aspects of healthcare provision and practice in the best way they can, context is crucially important. As McMillian puts it, ‘ethics should be grounded’ in the practical realities of the situation.1 What, where and who (...) are important questions that set the parameters of the debate and, to some extent, frame the subsequent solution or decision. What is happening in a particular case, what is the source of controversy, is it a conflict of values, regulations or professional viewpoints? Where does it take place, under which rules, jurisdiction or in which professional setting? And who does it involve? Whose rights, interests or decision-making capacity do we prioritise? All these contextual questions need to be carefully articulated before it is possible to draw any normative conclusions. The importance of context is clear in this issue’s ‘Engagement without entanglement: a framework for non-sexual patient–physician boundaries’ by Appel.2 What might be seen as entirely appropriate behaviour in one context, for example, when I help out a friend and let them stay in my house for a few weeks while they recover from an operation, is entirely inappropriate in another—in …. (shrink)

Paternalism has attracted new defenders in recent years. Such defenders typically either downplay the normative significance of autonomy or deny that we are sufficiently rational for paternalistic interventions to be objectionable.1 Both of these argumentative strategies constitute challenges to John Stuart Mill’s influential anti-paternalistic ‘harm principle’, which states that coercive interference with the liberty of competent adults is justifiable only if such interference prevents harm to non-consenting third parties (Mill, p. 23).2 In this journal, Wilkinson has provided a novel, provocative (...) defence of paternalism in the medical context—one that (provisionally) accepts rather than challenges Mill’s harm principle.3 Wilkinson’s argument is complex. But he begins with Parfit’s influential account of personal identity.4 According to Parfit, Alice at T1 can be the same person as Alice at T2, but the extent to which Alice at T1 and Alice at T2 are similar depends on the extent to which there are ‘chains’ of strong psychological connections between Alice at T1 and Alice at T2. Strong psychological connections, in turn, are mental states such as intentions or beliefs, or psychological traits. For example, if Alice at T2 remembers very little about herself the day before, and the day before that, all the way to Alice at T1, Alice at T2 has completely different psychological traits than Alice at T1—for example, Alice at T1 was courageous, whereas Alice at T2 is cowardly—then Alice at T1 and Alice at T2 are distinct persons. If the harm principle is correct and Alice is autonomous, it is permissible to interfere with Alice’s liberty only if it prevents harm to some non-consenting third party. But if we accept Parfit’s view on personal identity, then a novel defence of paternalistic intervention emerges: Alice at T2 may well be a distinct person from Alice at T1. So, …. (shrink)

A key objective of the law in the assessment of decision-making capacity in clinical settings is to allow clinicians and judges to avoid making value judgements about the reasons that patients use to refuse treatment. This paper advances two lines of argument in respect of this objective. The first is that authorities cannot rationally avoid significant evaluative judgements in the assessment of a patient’s own assessment of the facts of their case. Assessing reasoning is unavoidably value-laden. Yet the underlying motivation (...) behind clinicians’ and the law’s value-neutral aims, ie, the avoidance of undue paternalism, is worth preserving. That being so, the second line of argument will try to show that that underlying motivation is better served in a limited range of cases by embedding a ‘reversibility standard’ in the assessment process so that the patient can, if they wish, and in due course, bring about the consequences that they were prevented from realising as a result of a determination of incapacity. (shrink)

The transplant community has faced unprecedented challenges balancing risks of performing living donor transplants during the COVID-19 pandemic with harms of temporarily suspending these procedures. Decisions regarding postponement of living donation stem from its designation as an elective procedure, this despite that the Centers for Medicare and Medicaid Services categorise transplant procedures as tier 3b (high medical urgency—do not postpone). In times of severe resource constraints, health systems may be operating under crisis or contingency standards of care. In this manuscript, (...) the United Network for Organ Sharing Ethics Workgroup explores prioritisation of living donation where health systems operate under contingency standards of care and provide a framework with recommendations to the transplant community on how to approach living donation in these circumstances.To guide the transplant community in future decisions, this analysis suggests that: (1) living donor transplants represent an important option for individuals with end-stage liver and kidney disease and should not be suspended uniformly under contingency standards, (2) exposure risk to SARS-CoV-2 should be balanced with other risks, such as exposure risks at dialysis centres. Because many of these risks are not quantifiable, donors and recipients should be included in discussions on what constitutes acceptable risk, (3) transplant hospitals should strive to maintain a critical transplant workforce and avoid diverting expertise, which could negatively impact patient preparedness for transplant, (4) transplant hospitals should consider implementing protocols to ensure early detection of SARS-CoV-2 infections and discuss these measures with donors and recipients in a process of shared decision-making. (shrink)

Psychiatric involvement in patient morality is controversial. If psychiatrists are tasked with shaping patient morality, the coercive potential of psychiatry is increased, treatment may be unfairly administered on the basis of patients’ moral beliefs rather than medical need, moral disputes could damage the therapeutic relationship and, in any case, we are often uncertain or conflicted about what is morally right. Yet, there is also a strong case for the view that psychiatry often works through improving patient morality and, therefore, should (...) aim to do so. Our goal is to offer a practical and ethical path through this conflict. We argue that the default psychiatric approach to patient morality should be procedural, whereby patients are helped to express their own moral beliefs. Such a procedural approach avoids the brunt of objections to psychiatric involvement in patient morality. However, in a small subset of cases where patients’ moral beliefs are sufficiently distorted or underdeveloped, we claim that psychiatrists should move to a substantive approach and shape thecontentof those beliefs when they are relevant to psychiatric outcomes. The substantive approach is prone to the above objections but we argue it is nevertheless justified in this subset of cases. (shrink)

In this paper, we propose a novel approach to permit members of the public opportunity to record more nuanced wishes in relation to organ donation. Recent developments in organ donation and procurement have made the associated processes potentially more multistaged and complex than ever. At the same time, opt-out legislation has led to a more simplistic recording of wishes than ever. We argue that in order to be confident that a patient would really wish to go ahead with the various (...) interventions and procedures that now accompany organ donation, more nuanced information than a simple ‘yes’ or ‘no’ may be required. This is of particular importance for donation after circulatory death, where some interventions to facilitate donation occur when the patient is still alive. We propose the implementation of an online form to allow people to record more nuanced wishes in relation to donation, including an indication of competing wishes and how these should be weighed into decision-making. We argue that this approach will promote autonomous decision-making for the public, potentially reduce difficulties that family members encounter at the time of organ donation, and should make medical staff more confident that they are truly acting according to the wishes and best interests of their patients. (shrink)

At the time of writing, the UK Government’s ‘Illegal Migration Bill’1 had started progressing through the House of Commons. The Bill will enable the removal of people who have come to the UK seeking asylum by ‘illegal’ routes, including via the dangerous Channel crossing in small boats.2 That duty would apply whether a person makes a protection claim, human rights claim or is a victim of modern slavery or human trafficking. Asylum seekers risk crossing the Channel because there are very (...) few, if any, safe and lawful ways to reach the UK. At least 60% of the people who have made the crossing last year would be recognised as refugees through the asylum process.3 The Bill will also give the UK Secretary of State a follow up duty to deny people arriving by ‘illegal’ routes access to the asylum system and to permanently deny them legal status in the UK, this includes leave to remain and citizenship. On the 24 March, the Council of Europe Commissioner for Human Rights wrote to both Speakers of the UK parliament, stating ‘… the Bill would have serious consequences both for the rights of refugees, asylum seekers and migrants in the UK, and for the upholding of the UK’s international obligations more generally. The UNHCR [UN Refugee Agency] has already stated that the Bill is in clear breach of the UK’s obligations under the 1951 …. (shrink)

A few decades from now, it might become possible to gestate fetuses in artificial wombs. Ectogestation as this is called, raises major legal and ethical issues, especially for abortion rights. In countries allowing abortion, regulation often revolves around the viability threshold—the point in fetal development after which the fetus can survive outside the womb. How should viability be understood—and abortion thus regulated—after ectogestation? Should we ban, allow or require the use of artificial wombs as an alternative to standard abortions? Drawing (...) on Cohen, I evaluate three possible positions for the post-ectogestative abortion laws: restrictive, conservative and liberal. While the restrictive position appears untenable, I argue that the liberal and conservative positions can be combined to form a legally and morally coherent basis for post-ectogestative abortion legislation, offering an improvement from the point of both prolife and prochoice positions. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues associated with (...) environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

Interference is paternalistic when it restricts an individual’s freedom for their own good. Anti-paternalists, such as John Stuart Mill, object to this for various reasons, including that the individual is usually a better judge of her own interests than the would-be paternalist. However, Wilkinson argues that a Parfitian reductivist approach to personal identity opens the door to what he calls ‘identity-relative paternalism’ where someone’s present action is restricted for the sake of a different future self.1 This is an interesting argument, (...) but it is not clear whether it involves permissible paternalism. At the risk of stating the obvious, permissible paternalism must be both permissible and paternalistic. Wilkinson’s identity-relative paternalism could be either, but not obviously both. If the present and future selves are different individuals, then interference is potentially permissible but no longer paternalistic. Alternatively, they are identical, in which case the interference is genuine paternalism, but cannot be justified by appeal to their distinctness. Wilkinson may escape this dilemma by invoking Parfit, who challenges the common notion that identity is all or nothing.2 According to Parfit’s revisionary view, the present and future self may share some connections but not others. However, once we have identified these similarities and differences, there is no further question whether or not they …. (shrink)

Identity-Relative Paternalism, as defended by Wilkinson, holds that paternalistic intervention is justified to prevent an individual from doing to their future selves (where there are weakened prudential unity relations between the current and future self) what it would be justified to prevent them from doing to others.1 Wilkinson, drawing on the work of Parfit and others, defends the notion of Identity-Relative Paternalism from a series of objections. I argue here, however, that Wilkinson overlooks a significant problem for Identity-Relative Paternalism—namely, that (...) it yields unactionable and self-contradictory results when applied to choices where both options present potential harms to future selves. To illustrate this point, let us consider the following: > A is an acclaimed oboist, for whom the practice and performance of music has brought deep joy throughout their adult life. A, however, develops a condition which will not only cause the rapid loss of their manual dexterity and capacity to hear, but will also certainly be fatal within the year. Suppose further that Drug Z, if taken now, will slow the loss of A ’s dexterity and hearing, but will hasten their demise by a number of months. > > A considers the choice of whether or not to take the drug. A believes that they have had a long and joyful life, but would, all else equal, like to spend as much time as possible with their family. However, A also understands that, without the capacity to enjoy the music which has been central to their life, that those remaining months would likely be joyless in a meaningful way. Taking this background, let us consider the first of A ’s options: to prioritise retaining their ability to enjoy music, and, therefore, to take the drug. Within this branch of the choice, there are two potential future selves: call these …. (shrink)

In his essay on paternalism and personal identity, Wilkinson draws on Derek Parfit’s Reasons and Persons (1984) to call for a reappraisal of the role of paternalism in healthcare decision-making in situations in which patients with capacity make decisions which are likely to have harmful consequences for themselves.1 The imperative to respect autonomy, coupled with JS Mill’s insistence that the state is justified in interfering with an individual’s liberty only in situations in which she harms or threatens to harm another (...) person, leaves clinicians with little room to constrain decisions in which a patient’s choice may seriously harm her. Parfit reduces personal identity to the continuity of psychological and physical traits across the lifecourse, and suggests that, since these sets of characteristics change significantly over time, it may make more sense to view a person at different time points as different ‘selves’, rather than as the same person. Parfit’s defence of paternalism involves arguing that, given this inevitable lack of continuity, causing harm to one’s future self is analogous to harming another person and that intervening to prevent this may be justifiable in accordance with the Harm Principle.2 The issue of personal identity has received considerable attention in the philosophical literature and it remains a vexed question. Parfit’s argument, along with the thought experiments on …. (shrink)

Hardman and Hutchinson claim that ethics is ‘grounded in particular, everyday concerns’. According to them, an implication of this is that ethics courses for (future) clinicians should de-emphasise teaching the theories and principles of philosophical ethics and focus instead on pedagogical activities more closely related to everyday concerns, for example, exposure to real patient accounts. I respond that, even if ethics is an ‘everyday’ phenomenon, learning philosophical ethics may be of significant practical benefit to clinicians. I argue that the theories (...) of philosophical ethics can reasonably be interpreted as partial, simplified descriptions—or models—of moral phenomena, and that they can be effectively deployed in tandem by clinicians as complementary decision-making tools for help in navigating ethically complex situations in the clinic. (shrink)

I am grateful to the commentators for their thoughtful engagement with my paper.1 I am unable in this short response to reply to all of the important questions raised. Instead, I will focus on the practical application of identity-relative paternalism. Some commentators felt that this novel concept would yield implausible implications,2 others that it would have no impact because of uncertainty,3 or because existing ethical principles would yield the same conclusion.4 In the paper, I proposed the following principle: > Identity-relative (...) paternalistic intervention: Individuals should be prevented from doing to future selves (where there are weakened prudential unity relations between the current and future self) what it would be justified to prevent them from doing to others. What sorts of intervention might fit under this principle? Garstman et al give the example of living kidney donation.2 They imagined ‘Beth’, who altruistically decides to donate a kidney to a third party. Beth’s decision would mean that a future BethT2 would be deprived of a kidney, be at risk of immediate perioperative complications and would be at (somewhat) higher risk of long-term health complications including renal failure. But they argue that we would be justified in preventing someone from inflicting such harms on a third party (eg, we should stop someone from stealing a kidney). Hence, they claim that identity relative paternalism would rule …. (shrink)

Is it ethical for doctors or courts to prevent patients from making choices that will cause significant harm to themselves in the future? According to an important liberal principle the only justification for infringing the liberty of an individual is to prevent harm to others; harm to the self does not suffice.In this paper, I explore Derek Parfit’s arguments that blur the sharp line between harm to self and others. I analyse cases of treatment refusal by capacitous patients and describe (...) different forms of paternalism arising from a reductionist view of personal identity. I outline an Identity Relative Paternalistic Intervention Principle for determining when we should disallow refusal of treatment where the harm will be accrued by a future self, and consider objections including vagueness and non-identity.Identity relative paternalism does not always justify intervention to prevent harm to future selves. However, there is a stronger ethical case for doing so than is often recognised. (shrink)

In social systems or spaces, distance between the centre and the periphery breeds epistemic injustice. There are growing accounts of epistemic injustice in health-related fields, as in the article by Pratt and de Vries.1 The title of the article asks: ‘Where is knowledge from the global South?’ Like me, you may answer by saying: ‘Knowledge from the global South is in the global South’. That answer says a lot about how we right epistemic injustice done to actors in the global (...) South or the periphery, including in health ethics. Pratt and de Vries identified four sets of actors (individuals, institutions, journals and funders) responsible for righting epistemic injustice. For three of the four sets of actors, they recognised the need for—or the possibility of—symmetry between global North and global South. Except journals. They did not seriously consider that journals are either present in or could belong to the global South; to the periphery. Platforms for knowledge exchange, circulation, cultivation and curation—such as journals, conferences, publishers, blogs, archives, seminars, books and the media, social or traditional—are neither physically nor epistemically neutral. They are situated. The BBC cannot do for Nigeria or Australia what it does for Britain; neither can the BMJ. Many of us take our position at the centre or periphery as neutral, natural, necessary or permanent. But the African American writer Toni Morrison proved the opposite with her career: ‘I stood at the border, stood at the edge and claimed it as central. l claimed it as central, and let the rest of the world move over to where I was.’2 Although physically in the USA, Toni Morrison was writing …. (shrink)

Doctors Pratt and de Vries propose a well-structured and courageous approach to analyse and repair an insufficiently recognised discussion about epistemologies and knowledge production in bioethics.1 The authors invite researchers, scholars, public health experts and bioethicists from the global North to reflect about their lack of imagination regarding different sources of narratives produced by the global South. There is a critical analysis of injustices and an urgent call for global bioethicists to reorient their field and focus on the analysis and (...) development of ethical interventions to achieve a comprehensive epistemic justice for global health ethics. Feminist bioethicists from the global South already argued about the importance of the voices and biographies of the people and groups in the communities to reframe the bioethical reasoning regarding the meaning of individual’s needs during public health and humanitarian emergencies.2 Over a decade ago, Diniz and Guilhem described the role and goal of feminist bioethics in Latin America, shaped in an oppressive context promoted and created by …. (shrink)

Pratt and de Vries1 pose an important and uncomfortable question to all stakeholders in the global bioethics space. If global bioethics as they define it is ‘the ethics of public health and healthcare problems that are characterised by a global level effect or that require action beyond individual countries, and the ethics of research related to such problems’, one would expect justice and inclusivity to be among the ethical priorities. Yet, Pratt and de Vries carefully demonstrate how different forms of (...) epistemic injustice and coloniality are embedded in the structure, generation of knowledge and praxis of global bioethics. They do this by unpicking three layers at which coloniality and epistemic injustice operate; knowledge-producer, knowledge-applied and knowledge-solicited. The authors also offer a three-pronged incremental approach to how individual and institutional actors in global bioethics can contribute to epistemic justice in the field. Pratt and de Vries present their work as ‘a first step towards reorienting the field’ of global health bioethics away from epistemic injustice. Indeed, theirs is a mapping, problem statement and recommendations piece …. (shrink)

The Guidelines for Stem Cell Research and Clinical Translation, recently issued by the International Society for Stem Cell Research (ISSCR), include a number of substantive revisions. Significant changes include: (1) the bifurcation of ‘Category 3 Prohibited research activities’ in the 2016 Guidelines into ‘Category 3A Research activities currently not permitted’ and ‘Category 3B Prohibited research activities’ in the 2021 guidelines and (2) the move of heritable human genome editing research out of the ‘prohibited’ category and into the ‘currently not permitted’ (...) category. These changes are noteworthy because of the absence of a clear demarcation line between the two categories insofar as, by definition, that which is ‘prohibited’ is ‘currently not permitted’, and vice versa. Permanence is not part of the definition of ‘prohibition’. In principle, a prohibition can be rescinded at any time. This begs the question ‘Why make a policy change that has no apparent practical effect?’ One hypothesis is that the recategorisation of specific ‘prohibited’ research activities as ‘currently not permitted’ is meant to seed intuitions about which prohibited research activities should ‘soon’ be permitted subject to specialised scientific and ethics review and approval. (shrink)

A rich literature in bioethics argues against the use of anonymous gamete donation in the name of the ‘interest in knowing one’s genetic origins’. This interest stems from medical as well as psychosocial and identity reasons. The term ‘genealogical bewilderment’ has been coined to express the predicament of those deprived of access to information about their origins. Another rich body of literature in bioethics discusses arguments for and against posthumous-assisted reproduction (PAR), with a recent focus on PAR that is initiated (...) by the parents of a deceased man (rather than his partner). This paper revisits arguments against PAR, in light of arguments regarding the interest in knowing one’s genetic origins. Limiting the discussion to the specific context of parent-initiated PAR (PIPAR), we argue that the use of cryopreserved sperm from a deceased identifiable man in the context of PIPAR may be ethically preferable when compared with the use of anonymous donor sperm, since it allowsgenealogical certainty, that is, giving the prospective child access to information about the identity, life story and ancestry of the genetic progenitor as well asgenealogical embeddedness, that is, close relationship with extended family members. (shrink)

What does justice in global health bioethics require, and how might we achieve it? Two important contributions to this issue of the Journal address theoretical and practical aspects of these questions in different but complementary ways. From their careful analysis of ‘epistemic injustice’ in global health ethics (‘injustice as it applies to knowledge’ which in one way or another puts a person at a disadvantage), Pratt and de Vries1 conclude that to achieve justice, much depends on what is meant by (...) ‘we’ (‘the people designing, conducting and using knowledge from research’) as well as the ‘what’ (‘the overall purpose/goal’) and the ‘where’ (‘the context in which it is undertaken’) of research. At present, they argue, epistemic injustice in bioethics is characterised by ‘coloniality of knowledge’: the ‘silencing of the epistemologies, theories, principles, values, concepts, and experiences of the global South’ is evident, for example, in ‘an ignoring or rejection of the plurality of knowledge’ and the ‘presentation of the works of a few European philosophers as “universal truths”’. ‘Cognitive justice’, by contrast, ‘affirms the epistemological diversity of the world’ and draws ‘attention to inequalities in the knowledge that is valued in today’s world, including …. (shrink)

Moral injury results from the violation of deeply held moral commitments leading to emotional and existential distress. The phenomenon was initially described by psychologists and psychiatrists associated with the US Departments of Defense and Veterans Affairs but has since been applied more broadly. Although its application to healthcare preceded COVID-19, healthcare professionals have taken greater interest in moral injury since the pandemic’s advent. They have much to learn from combat veterans, who have substantial experience in identifying and addressing moral injury—particularly (...) its social dimensions. Veterans recognise that complex social factors lead to moral injury, and therefore a community approach is necessary for healing. We argue that similar attention must be given in healthcare, where a team-oriented and multidimensional approach is essential both for ameliorating the suffering faced by health professionals and for addressing the underlying causes that give rise to moral injury. (shrink)

This paper describes the UK Research Ethics Committee’s (REC) preparations and review of the global first SARS-CoV-2 human infection challenge studies. To frame our review, we used the WHO guidance and our UK Health Research Authority ethical review framework. The WHO criteria covered most issues we were concerned about, but we would recommend one further criterion directing RECs to consider alternative research designs. Could research questions be equally well answered by less intrusive studies? The committee met virtually, ensuring broad representation (...) across the UK nations and also ensuring applicants could attend easily. We worked in collaboration with the applicants but while we recognise that such proximity might raise the accusation of ‘collusion’, we made every effort to maintain ‘moral distance’ and all decisions were made by the committee alone. Prior existing processes and policy facilitated training and review but even with this preparation, review took time and this could have hindered a rapid response to the emergency. Review for the various follow-on studies will now be speedier and once the pandemic has subsided, our group could be reconvened in future emergencies. In conclusion, we have tried to make decisions in good faith. We know there is controversy and disagreement and reasonable people may feel we have made the wrong decision. A more detailed analysis, built on the WHO guidance, is provided in online supplemental material. (shrink)

The topic of epistemic injustice in global health ethics is complex, important and vast. While presenting as nuanced and complete a picture of the challenge as we possibly could, we were acutely aware of our positionality and how it gave us a certain viewpoint that would need to be expanded by others with different positions and experiences. We were, therefore, delighted to receive the collected commentaries by Atuire,1 Abimbola,2 Frimpong-Mansoh,3 Nyamnjoh and Ewuoso,4 Tangwa,5 Ambrogi et al.6 We would like to (...) thank these authors for furthering our account by raising questions, pointing out gaps or complementing our analysis. The points raised by these authors—and many points that will undoubtedly be raised by others in future—should be critically engaged with as we collectively define and work towards a more epistemically just global health ethics. Specifically, two points stand out. First, Frimpong-Mansoh accurately diagnoses our ambiguity about being drawn into debates about relativism in bioethics. We …. (shrink)

Over the last two decades or so, the need to decolonise bioethics and make it inclusive, equitable and accommodative of voices from the traditionally marginalised global South has received increasing attention in academic scholarship. The recent publication by Pratt and de Vries offers a very comprehensive critical analysis and thoughtful overview of the issue, using global health ethics as its starting point.1 I fundamentally agree with their characterisation of the issue as an ‘epistemic justice’ problem. I further find their recommended (...) conceptual and practical ideas for measuring epistemic injustice and ethical responsibilities to promote epistemic justice very thoughtful and insightful. However, I find their responses to possible objections to their arguments a bit hasty and unclear, especially the idea that ‘greater epistemic justice calls for global health ethics to advance a transcultural framework of ethical values and principles’ (p. 7). They look ambiguous on their position on the fundamental global bioethical question regarding the possibility of an intercultural ethical framework. I think the question of whether there are global ethical values and principles that are commonly shared among human beings in the global world is a fair and legitimate issue that deserves deep attention and a persuasive answer by those who call for more inclusive and equitable global bioethics. I attempt to flesh out this issue in a bit more detail to further enrich the discussion. Pratt …. (shrink)

In ‘Does zero-COVID neglect health disparities?’ we made the case that strict zero-COVID policies implemented during the coronavirus 2019 disease (COVID-19) pandemic raise health equity concerns so serious that these policies are not ethically sustainable.1 Zero-COVID, which has dominated many Pacific Rim societies, sets zero deaths from COVID-19 as a goal, and aims to reach it by forcefully containing transmission through short-term lockdowns, followed by stringent find, test, trace and isolate methods. Since the paper appeared in 2021, the Omicron variant (...) and subvariants took hold, making a strict zero goal unattainable and leading many countries to abandon it. Careful ethical analysis of zero-COVID’s impact remains crucially important, however, not only because the novel coronavirus continues to surprise us, but also to ensure lessons learnt from this pandemic are carried forward to future pandemics. In ‘Zero-COVID and health inequities’,2 Schaefer argues that it is possible to pursue zero-COVID yet offset any negative impacts on disadvantaged groups. Citing Singapore, where zero-COVID led to outbreaks in crowded and unsanitary migrant workers dormitories, Schaefer notes the government offset these effects, setting up less densely populated ‘quick build dormitories’ that caused daily case counts to drop, even while zero-COVID remained …. (shrink)

This paper questions an exclusively state-centred framing of global health justice and proposes a multilateral alternative. Using the distribution of COVID-19 vaccines to illustrate, we bring to light a broad range of global actors up and down the chain of vaccine development who contribute to global vaccine inequities. Section 1 (Background) presents an overview of moments in which diverse global actors, each with their own priorities and aims, shaped subsequent vaccine distribution. Section 2 (Collective action failures) characterises collective action failures (...) at each phase of vaccine development that contributed to global vaccine disparities. It identifies as critical the task of establishing upstream strategies to coordinate collective action at multiple stages across a range of actors. Section 3 (A Multilateral model of global health governance) takes up this task, identifying a convergence of interests among a range of stakeholders and proposing ways to realise them. Appealing to a responsibility to protect (R2P), a doctrine developed in response to human rights atrocities during the 1990s, we show how to operationalise R2P through a principle of subsidiarity and present ethical arguments in support of this approach. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant (...) condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

Elizabeth Chloe Romanis argues that surrogacy, uterine transplantation (UTx) and ectogestation belong to a genus of ‘assisted gestative technologies” (“AGTs”).1 These technologies are conceptually distinct from assisted reproductive technologies (ARTs) in that they support gestation rather than conception. Romanis argues that they also raise some overlapping ethical and policy issues that are best appreciated by ‘considering these technologies together’, thus placing the issues that AGT’s share at the forefront of ethical analysis. The neologism ‘AGTs’ picks out a distinctive and important (...) category of technologies, and there is value in considering the ethical parallels between various AGT’s. However, the category of AGTs should provide neither the only nor the main level of ethical analysis. Surrogacy, UTx and ectogestation share important parallels not only with each other but also with other practices; indeed, some of these parallels are stronger than those AGT’s share with each other. Consider ectogestation. One striking implication of ‘artificial placentas’ is that they may make it possible to terminate a pregnancy without causing the death of the fetus. This is noteworthy in part because it threatens to disrupt one influential defence of abortion rights: that they are protected by something like a moral right to bodily integrity. Once fetuses can be transferred to artificial wombs, bodily integrity would no longer support a …. (shrink)

Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused (...) approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities—including regulators, ethics committees, funders and publishers of academic research—to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this ‘ethical preparedness’ and outline how a research ethics system might make space for this approach. (shrink)

Non-therapeutic research with imminently dying patients in intensive care presents complex ethical issues. The vulnerabilities of the imminently dying, together with societal disquiet around death and dying, contribute to an intuition that such research is beyond the legitimate scope of scientific inquiry. Yet excluding imminently dying patients from research hinders the advancement of medical science to the detriment of future patients. Building on existing ethical guidelines for research, we propose a framework for the ethical design and conduct of research involving (...) the imminently dying. To enable rapid translation to practice, we frame the approach in the form of eight ethical questions that researchers and research ethics committees ought to answer prior to conducting any research with this patient population. (1) Does the study hypothesis require the inclusion of imminently dying patients? (2) Are non-therapeutic risks and burdens minimised consistent with sound scientific design? (3) Are the risks of these procedures no more than minimal risk? (4) Are these non-therapeutic risks justified insofar as they are reasonable in relation to the anticipated benefits of the study? (5) Will valid informed consent be obtained from an authorised surrogate decision maker? (6) How will incidental findings be handled? (7) What additional steps are in place to protect families and significant others of research participants? (8) What additional steps are in place to protect clinical staff and researchers? Several ethical challenges hinder research with imminently dying patients. Nonetheless, provided adequate protections are in place, non-therapeutic research with imminently dying patients is ethically justifiable. Applying our framework to an ongoing study, we demonstrate how our question-driven approach is well suited to guiding investigators and research ethics committees. (shrink)

Bridget Pratt and Jantina de Vries1 have made an insightful contribution to enhancing epistemic justice in global health ethics. Their elaboration details intellectual (external) exclusion—described as non-representation—across three levels, and at its core, proposes inclusion to rectify this. To extend this work, we contend that it is worth probing the nuances and challenges associated with inclusion as a response to epistemic injustice. These include (A) the meaning of inclusion outside binary vocabularies of north and south; (B) the possibility of forms (...) of inclusion that produce exclusion and (C) inclusion as a politics of belonging with intellectual confinement as a possible epistemic harm. How the problem of injustice is described influences the substantive meaning of inclusion. In describing epistemic injustice, north and south (centre and periphery) are used as relational markers of power, inclusion, authority and exclusion. While this binary vocabulary is seductive, it can appear to confer proprietary rights to the concepts, theories and values described as originating in the global north (and south). However, such inscriptions of ownership are not always a correct reading of the problem. Sometimes, the ostensible western-ness and non-western-ness of ideas are taken for granted, particularly …. (shrink)

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We (...) first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change. (shrink)

In a feature article in the Journal of Medical Ethics entitled ‘Where is knowledge from the global South? An account of epistemic justice for a global bioethics’,1 Pratt and de Vries give a highly persuasive account of global injustices within global bioethics especially health ethics against the global South that every bioethicist needs to read and to reflect on. The opening three sentences of the abstract of this account capture the ethical essence of the whole article. > The silencing of (...) the epistemologies, theories, principles, values, concepts and experiences of the global South, constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic, and endangers the credibility of the entire field.1 It is quite significant that both authors of this article are scholars of the global North with research interest in the global South; so where are the scholars of the global South, the putative conceptualisers and creators of global South knowledge who should be complaining about the injustice in question? The answer to this question is part and parcel of the question itself that has been so boldly raised by Pratt and de Vries. They go on to describe in some detail the general conditions and requirements of epistemic justice for global health ethics and bioethics including even a consideration …. (shrink)

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are theleastlikely (...) to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

The onset of the COVID-19 pandemic has necessitated advances in bioethical approaches to medical decision-making. This paper develops an alternative method for rationing care during periods of resource scarcity. Typical approaches to triaging rely on utilitarian calculations; however, this approach introduces a problematic antihumanist sentiment, inviting the proposition of alternative schemata. As such, we suggest a feminist approach to medical decision-making, founded in and expanding upon the framework of Eva Kittay’s Ethics of Care. We suggest that this new structure addresses (...) the issue of medical decision-making during times of resource scarcity just as well as pure utilitarian approaches while better attending to their significant theoretical concerns, forming a coherent alternative to the current bioethical consensus. (shrink)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief response, we critically engage Gilbertson (...) et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)

Imagination and idealism are particularly important creative epistemic virtues for the medical sciences if we hope to improve the health of the world’s ageing population. To date, imagination and idealism within the medical sciences have been dominated by a paradigm of disease control, a paradigm which has realised significant, but also limited, success. Disease control proved particularly successful in mitigating the early-life mortality risks from infectious diseases, but it has proved less successful when applied to the chronic diseases of late (...) life (like cancer). The time is ripe for the emergence and prominence of a supplementary medical research paradigm, the paradigm of ‘healthy ageing’ which prioritises the goal of rate (of ageing) control rather than disease control. This is the difference between extending the human healthspan versus extending survival by managing (or trying to eliminate) the multi-morbidities, frailty and disability currently prevalent in late life. The idealism of the disease control paradigm is myopic because it ignores the health constraints imposed by the inborn ageing process itself, a biological reality which is already inflicting significant economic and disease burdens on the world’s ageing populations. Unless the medical sciences retard the rate of biological ageing, these problems will continue to be amplified as larger numbers of persons survive into late life. (shrink)

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point of death. The following limits are commonly applied: (1) symptoms should be refractory, (2) sedatives should be administered proportionally to symptoms and (3) the patient should be imminently dying. The term ‘Expanded TS’ (ETS) can be used to describe the use of sedation at the end of life outside one or (...) more of these limits.In this paper, we explore and defend ETS, focusing on jurisdictions where assisted dying is lawful. We argue that ETS is morally permissible: (1) in cases of non-refractory suffering where earlier treatments are likely to fail, (2) where gradual sedation is likely to be ineffective or where unconsciousness is a clinically desirable outcome, (3) where the patient meets all criteria for assisted dying or (4) where the patient has greater than 2 weeks to live, is suffering intolerably, and sedation is considered to be the next best treatment option for their suffering.While remaining two distinct practices, there is scope for some convergence between the criteria for assisted dying and the criteria for ETS. Dying patients who are currently ineligible for TS, or even assisted dying, should not be left to suffer. ETS provides one means to bridge this gap. (shrink)

I’m grateful to the commentators for their thoughtful and thought-provoking replies. Psychiatric service-users often feel disempowered relative to a profession (psychiatry) and so sometimes enlist the aid of another profession (philosophy) to redress the balance. All well and good, but it is vital in this context not to set one’s critical faculties on one side. Although Dr Kious1 thinks that is just what I have done, what I was trying to do was to call a halt to the uncritical use (...) of a piece of philosophy, the concept of testimonial injustice. It is a fine tool in many contexts, it is the newest tool in the …. (shrink)

Video recording is widely available in modern operating rooms. Here, I argue that, if patient consent and suitable technology are in place, video recording of surgery is an ethical duty. I develop this as aduty to protect,arguing for professional and institutional duties, as distinguished forduties of rescue.A professional duty to protect is described in mental healthcare. Practitioners have to take reasonable steps to prevent serious, foreseeable harm to their clients and others, even if that entails a non-consensual breach of confidentiality. (...) I argue surgeons have a similar duty to patients which means that, provided the patient consents, surgery should be routinely videoed. This avoids non-consensual breaches of patient confidentiality and is aligned with stated professional obligations.An institutional duty to protect means institutions have to take reasonable steps to prevent serious, foreseeable harm at the hands of their surgeons. Rulli and Millum highlighted how institutions can meet their duty using a more consequentialist approach that balances wider interests.To test the force and scope of such duties, I examine potential impacts of routine videoing on aspects of autonomy, justice, beneficence and non-maleficence. I find routine videoing can benefit areas including safety, candour, consent and fairness in access (to surgical careers and expertise). Countervailing claims, for example, on liability, confidentiality and privacy can be resisted—such that where consent and the technology are in place, routine videoing meets aduty of easy protection. In other words, its use should be standard of care. (shrink)

Disproportional morbidity and mortality experienced by ethnic minorities in the UK have been highlighted by the COVID-19 pandemic. The ‘Black Lives Matter’ movement has exposed structural racism’s contribution to these health inequities. ‘Cultural Safety’, an antiracist, decolonising and educational innovation originating in New Zealand, has been adopted in Australia. Cultural Safety aims to dismantle barriers faced by colonised Indigenous peoples in mainstream healthcare by addressing systemic racism.This paper explores what it means to be ‘culturally safe’. The ways in which New (...) Zealand and Australia are incorporating Cultural Safety into educating healthcare professionals and in day-to-day practice in medicine are highlighted. We consider the ‘nuts and bolts’ of translating Cultural Safety into the UK to reduce racism within healthcare. Listening to the voices of black, Asian and minority ethnic National Health Service (NHS) consumers, education in reflexivity, both personal and organisational within the NHS are key. By listening to Indigenous colonised peoples, the ex-Empire may find solutions to health inequity. A decolonising feedback loop is required; however, we should take care not to culturally appropriate this valuable reverse innovation. (shrink)

Hume criticised ‘humility’ as a ‘monkish virtue’ and objected to it on the basis that such virtues ‘stupefy the understanding and harden the heart, obscure the fancy and sour the temper.’1 Despite the appeal of Hume’s plea for less restraint and self-denial, other thinkers such as Kant consider epistemic humility to be fundamental, given the limits of our rationality and our struggle to know and do the right thing.2 By epistemic humility, he did not mean weakness or being self-effacing, instead (...) he was referring to an appropriate degree of self-respect that’s tempered by an awareness of the ways in which we can go wrong. ‘Epistemic’ comes from the ancient Greek episteme, which is often translated as knowledge, understanding or acquaintance. So epistemic humility can be understood as an appropriate awareness of the limits of what we know, understand or have experienced. There are a number of reasons why epistemic humility and being mindful of the ways we can go wrong is important for medical ethics. They include that ethics is interdisciplinary and often focuses on the new, it discusses ethical questions that require detailed and accurate information and that it analyses issues …. (shrink)

To ban or significantly restrict visitors for patients in hospital could seem to be simply a sensible and easy precaution to take during a pandemic: a policy that is unpopular, perhaps, and even unfortunate, but not something that wrongs anyone. However, I argue that in fact such restrictions on visitors infringe upon a fundamental right, to freedom of association. While there may still be permissible restrictions on visitors, making the case for these becomes highly demanding. One common way to understand (...) the purpose of the fundamental liberties is as protecting us from interference in a core set of freedoms, even when such interference would be to our benefit or would promote the general good. This reframing of the importance of visitors in terms of a right also has implications for how to run hospitals beyond the pandemic era: it supports a rapid expansion of visitor access and suggests that any decision to significantly restrict visitors ought not be left in the hospital, or hospital trust’s, hands. (shrink)

Given the wide-reaching and detrimental impact of COVID-19, its strain on healthcare resources, and the urgent need for—sometimes forced—public health interventions, thorough examination of the ethical issues brought to light by the pandemic is especially warranted. This paper aims to identify some of the complex moral dilemmas faced by senior physicians at a major medical centre in Saudi Arabia, in an effort to gain a better understanding of how they navigated ethical uncertainty during a time of crisis. This qualitative study (...) uses a semistructured interview approach and reports the findings of 16 interviews. The study finds that participants were motivated by a profession-based moral obligation to provide care during the toughest and most uncertain times of the pandemic. Although participants described significant moral dilemmas during their practice, very few identified challenges as ethical in nature, and in turn, none sought formal ethics support. Rather, participants took on the burden of resolving ethical challenges themselves—whenever possible—rationalising oft fraught decisions by likening their experiences to wartime action or by minimising attention to the moral. In capturing these accounts, this paper ultimately contemplates what moral lessons can, and must be, learnt from this experience. (shrink)

In December 2022, the Office of the National Data Guardian (NDG)1 for health and social care in England published new guidance: What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care.2 Research in the UK consistently demonstrates that for the public to consider a secondary use3 of health and care data appropriate and acceptable, it must deliver a benefit back to the public.4 The aim of the (...) guidance is to help organisations to interpret and demonstrate the public good from their work more comprehensively, accurately, and consistently. The guidance defines and standardises the concept of public benefit to enable clearer interpretation and understanding. It aims to support better public benefit evaluations by: As the guidance is underpinned by a detailed dialogue with the public on what counts as a public benefit, it is hoped that following it will …. (shrink)

A comprehensive understanding of the ethics of the COVID-19 pandemic priorities must be sensitive to the influence of social inequality. We distinguish between ex-ante and ex-post relevance of social inequality for COVID-19 disadvantage. Ex-ante relevance refers to the distribution of risks of exposure. Ex-post relevance refers to the effect of inequality on how patients respond to infection. In the case of COVID-19, both ex-ante and ex-post effects suggest a distribution which is sensitive to the prevalence social inequality. On this basis, (...) we provide a generic fairness argument for the claim that welfare states ought to favour a healthcare priority scheme that gives particular weight to protecting the socially disadvantaged. (shrink)

Gilbertson et al should be commended for their insightful exploration of expanded terminal sedation (ETS)1; however, there are a number of concerns that I will address in this response. I will first better characterise the currently accepted and commonplace ‘standard’ TS (STS), and then argue that the advocated forms of ETS draw very close to—and at times clearly constitute a subtype of—euthanasia, as opposed to representing a similar but separate practice. I will then conclude with concerns regarding the inappropriate application (...) of ETS, particularly in the non-voluntary context. Gilbertson et al distinguish ‘gradual’ TS, which they state is the currently accepted form of TS, from ‘rapid’ TS, which is then argued to be a justifiable form of ETS. However, in my experience working in multiple large public teaching hospitals in New South Wales, Australia and consistent with local clinical practice guidelines,2 3 STS falls somewhere in the middle between ‘gradual’ and ‘rapid’ TS. STS explicitly aims to achieve permanent unconsciousness so as to eliminate the potential for (and therefore relieve) suffering; conversely, lighter or more intermittent forms of sedation, or administering sedatives with aims other than to achieve unconsciousness (eg, anxiolysis), do not constitute TS proper. STS uses doses proportionate to the extent of symptoms so as to avoid ‘overshooting’ and inadvertently administering excessive doses which actually hasten/cause death, in order to distinguish STS from euthanasia in this respect. This is achieved by gradually uptitrating doses when the patient appears distressed, and is therefore by definition …. (shrink)

Gilbertson et al present a considered analysis of the abstract problem of ‘sedation’ at the end of life,1 and it is reassuring to see the separation of multiple practises that are often grouped under the heading terminal sedation. In their work, the authors attempt to introduce and justify a new practice in the care of those dying with significant suffering—expanded terminal sedation (ETS). This analysis will not, however, help our colleagues at the bedside. Here, we will focus on the flaws (...) which are most relevant to clinicians: jurisdiction, uncertainty and reversibility. The authors’ focus on a jurisdiction that does already allow medically assisted in dying confuses their analysis. For example, either an instance of their proposed ETS does amount to intentionally hastening death, in which case it should be treated as a means of euthanasia and practised only where that is permitted, subject to its limits and regulations; or it does not amount to intentionally hastening death, in which case there is no reason to specify such jurisdictions. To explain that the most controversial elements of terminal sedation have been tacitly ‘accepted’ by the society in question does not invalidate the concerns. It is beyond the scope of this response to explore these, but to us, …. (shrink)

Gilbertson, Savulescu, Oakley and Wilkinson propose extending the availability of terminal sedation (TS) to patients with intractable pain and/or suffering who are expected to live more than 2 weeks (hence the designation of extended TS (ETS)) and to patients whose values are known but who do not have decision-making capacity.1 Their plan is worthy of serious consideration: it is, after all, based on the fundamental and well-recognised medical ethical values of patient autonomy and beneficence. But, even when restricted to jurisdictions (...) that allow assisted dying, the ETS proposal raises three important issues. When the authors speak of ‘assisted dying’ and of ‘Voluntary Assisted Dying (VAS)’, they refer specifically to the laws in Australia and similar ones in New Zealand, the Netherlands, Belgium, Luxembourg, Switzerland, Spain and Canada that permit clinicians either to provide patients with lethal medications for self-administration (formerly called physician-assisted suicide) or to administer lethal medications themselves (voluntary euthanasia). First, the authors distinguish—as do many patients and the public—between sedation to unconsciousness and death. Indeed, as the authors point out, the difference seems obvious: unconsciousness can be reversed, death cannot. Yet in the case of TS, this may be …. (shrink)

This is the first description of the questions that clinicians ask a department of clinical law, relating to the legal rules applicable to the care of their patients.ObjectivesTo describe in detail the demography of clinical legal enquiries made by clinicians of all professions concerning the care of their patients. To collate and categorise the varieties of enquiry, to identify phenotypic patterns. To provide colleges, regulators, commissioners, educators and the NHS with an insight into hitherto undescribed subject matter, better to understand (...) and respond to this aspect of clinical practice.DesignProspective collection of all clinical legal referrals recorded in writing over 12 years by a department of clinical law.SettingAn English Tertiary Hospital NHS Trust.ParticipantsClinical staff of the regulated professions, all seeking to have their clinical legal enquiries answered.Main outcome measuresThe description of the demography of clinical law.Results1251 written records were identified and reviewed. These were divided into nine broad clinical legal subject areas (domains): mental disorders, parents and children, incapacity, consent for treatment, disclosure of private information, other statutory, regulated practice, professional practice, clinical practice. Within these, 149 clinical legal phenotypes were identified to which each case could be assigned.ConclusionsAmong a broad range of enquiries, recognisable clinical legal phenotypes exist and have for the first time been described and categorised. These are clinical situations which clinicians need to be able to recognise and equipped to deal with. Doing so will likely facilitate timely and better treatment. (shrink)

We are grateful to the commentators on our article1 for their thoughtful engagement with the ethical and clinical complexity of expanded terminal sedation (ETS) in end-of-life care. We will start by noting some points of common ground, before moving on to the more challenging ways in which TS might be permissibly expanded. First, several commentators pointed out, and we completely concur, that it is important to provide patients with full information about their end-of-life options, including the ‘outcomes, uncertainties and costs (...) of ETS’.2 Where possible, they should be given time to ‘process their feelings and to reflect on how they wish to live in their last few days, weeks or months’.3 Furthermore, where patients receive sedation, it will be critical that they receive appropriate medical and nursing care to prevent physical complications such as pressure ulcers.2 This would be no different from other patients who are in states of reduced consciousness from disease. We acknowledge that there are heightened risks with earlier and more rapid TS, including the potential loss of spiritual and social moments,4 as well as the meaning that can be derived from conscious existential distress.3 However, while these conscious experiences might be valuable to some, others might weigh them less highly against the foreseen …. (shrink)

Endosex, in contrast to intersex, refers to innate physical sex characteristics judged to fall within the broad range of what is considered normative or typical for ‘binary’ female or male bodies by the medical field, or to persons with such characteristics1 (p. 437). In this short contribution, we explain the origins and increasing use of this little-known term and discuss its practical and ethical relevance to medicine as well as to scholarship from a range of disciplines concerned with individuals’ sexed (...) embodiment. There is growing awareness in many quarters of the term intersex— used within some discourses to refer to clusters of bodily attributes (as in ‘intersex traits’, also termed differences of sex development or variations of sex characteristics)1 or more broadly to persons (as in ‘intersex persons’) whose bodily attributes differ from the dominant clinical, biological, or legal paradigms that categorise and differentiate female and male bodies. Intersex traits have historically been stigmatised as monstrous, morbid or tragic, justifying surgical and hormonal ‘fixing’.2 Persons born with the attributes named with these terms, even if physically healthy, therefore risk unnecessary pathologisation and medicalisation, prompting interventions, often non-voluntary, into their bodies to make them appear or function in ways that are deemed more typically female or male. In addition, some legal and social systems automatically associate persons with these traits with third categories of sex—neither female nor male—which may or may not align with their sex designation at birth, sex of rearing, personal experience or self-conception (see Coda). Being seen as intersex or being judged to have …. (shrink)

Some contributions to the current literature on conscience objection in healthcare posit the notion that the requirement to refer patients to a non-objecting provider is a morally questionable undertaking in need of explanation. The issue is that providing a referral renders those who conscientiously object to being involved in a particular intervention complicit in its provision. This essay seeks to engage with such claims and argues that referrals can be construed in terms of what Harman calls morally permissible moral mistakes. (...) I go on to suggest that one might frame the (in)actions of those who exercise the right of non-participation generated by the claim to conscientiously object in similar terms; they can also be considered morally permissible moral mistakes. Finally, and given that the arguments already advanced involve simultaneously looking at the same issue from competing ethical perspectives, I offer some brief remarks that support viewing conscientious objection as an ethicopolitical device. (shrink)

In our recent article ‘The Ethics of the Algorithmic Prediction of Goal of Care Preferences: From Theory to Practice’1, we aimed to ignite a critical discussion on why and how to design artificial intelligence (AI) systems assisting clinicians and next-of-kin by predicting goal of care preferences for incapacitated patients. Here, we would like to thank the commentators for their valuable responses to our work. We identified three core themes in their commentaries: (1) the risks of AI paternalism, (2) worries about (...) attacks to our humanity stemming from the use of AI and (3) the possibility of designing AI systems for more relevant use cases than the one we consider in our work. We shall focus on these themes, leaving aside some other interesting suggestions, given the limited space available for our response. Diaz Milian and Bhattacharyya discuss the risks of AI paternalism highlighting how the use of an AI to predict goal of care preferences may incentivise clinicians and surrogates to shift the burden of decision making to the machine.2 In particular, ‘[i]f the AI-generated response is given priority above the other agents’2 and the AI makes decisions autonomously, then ‘AI paternalism’ would emerge.2 Against this possibility, the authors suggest four safeguards to be implemented in the AI life-cycle.2 These are procedures that may improve the trustworthiness of the AI and human control over it.3 We agree that it is important …. (shrink)

Artificial intelligence (AI) systems are quickly gaining ground in healthcare and clinical decision-making. However, it is still unclear in what way AI can or should support decision-making that is based on incapacitated patients’ values and goals of care, which often requires input from clinicians and loved ones. Although the use of algorithms to predict patients’ most likely preferred treatment has been discussed in the medical ethics literature, no example has been realised in clinical practice. This is due, arguably, to the (...) lack of a structured approach to the epistemological, ethical and pragmatic challenges arising from the design and use of such algorithms. The present paper offers a new perspective on the problem by suggesting that preference predicting AIs be viewed as sociotechnical systems with distinctive life-cycles. We explore how both known and novel challenges map onto the different stages of development, highlighting interdisciplinary strategies for their resolution. (shrink)

The JME editorial team selects its feature articles from the best papers accepted for publication based on their quality, novelty and capacity to move debate forward on a specific issue. Feature articles are made freely available and are published alongside reviewed and submitted commentaries. We do this partly to promote and acknowledge excellent work in medical ethics, but also to encourage authors to submit their best papers to the JME. JME feature articles have deepened the analysis of some central issues (...) for medical ethics. ‘Common morality’ is one way of underpinning general ethical principles and it is a concept that is central to the justification that Beauchamp and Childress give in their classic articulation of the four principles. 1 Rhodes’ critical discussion of common morality in her feature article 2 has been well cited since then, which is a good thing from the perspective of the author... (shrink)

Patient portals are poised to transform health communication by empowering patients with rapid access to their own health data. The 21st Century Cures Act is a US federal law that, among other provisions, prevents health entities from engaging in practices that disrupt the exchange of electronic health information—a measure that may increase the usage of patient health portals. Caregiver access to patient portals, however, may lead to breaches in patient privacy and confidentiality if not managed properly through proxy accounts. We (...) present an ethical framework that guides policy and clinical workflow development for healthcare institutions to support the best use of patient portals. Caregivers are vital members of the care team and should be supported through novel forms of health information technology (IT). Patients, however, may not want all information to be shared with their proxies so healthcare institutions must support the development and use of separate proxy accounts as opposed to using the patient’s own account as well provide controls for limiting the scope of information displayed in the proxy accounts. Lastly, as socioeconomic barriers to adoption of health IT persist, healthcare providers must work to ensure multiple streams of patient communication, to prevent further propagating health inequities. (shrink)

Equal access to vaccines has been one of the key ethical challenges during the COVID-19 pandemic. Most scholars consider the massive purchase and hoarding of vaccines by high-income countries, especially at the beginning of the pandemic, to be unjust towards the vulnerable living in low-income countries. A recent proposal by Andreas Albertsen of a vaccine tax has been put forward to remedy this problem. Under such a scheme, high-income countries would pay a contribution, conceptualised as a vaccine tax, dedicated to (...) buying vaccines and distributing them to low and middle-income countries. Proceeding from this proposal, we critically assess the feasibility of a vaccine tax and suggest how to conceptualise and implement a vaccine tax in practice. We present our ‘VaxTax model’ and explore its comparative advantages and disadvantages while considering other possible measures to address the global vaccine access problem, also in view of future pandemics and disease outbreaks. (shrink)

We provide ethical criteria to establish when vaccine mandates for healthcare workers are ethically justifiable. The relevant criteria are the utility of the vaccine for healthcare workers, the utility for patients (both in terms of prevention of transmission of infection and reduction in staff shortage), and the existence of less restrictive alternatives that can achieve comparable benefits. Healthcare workers have professional obligations to promote the interests of patients that entail exposure to greater risks or infringement of autonomy than ordinary members (...) of the public. Thus, we argue that when vaccine mandates are justified on the basis of these criteria, they are not unfairly discriminatory and the level of coercion they involve is ethically acceptable—and indeed comparable to that already accepted in healthcare employment contracts. Such mandates might be justified even when general population mandates are not. Our conclusion is that, given current evidence, those ethical criteria justify mandates for influenza vaccination, but not COVID-19 vaccination, for healthcare workers. We extend our arguments to other vaccines. (shrink)

Nietzche claimed that once we know why to live, we’ll suffer almost any how.1 Artificial intelligence (AI) is used widely for the how, but Ferrario et al now advocate using AI for the why.2 Here, I offer my doubts on practical grounds but foremost on ethical ones. Practically, individuals already vacillate over the why, wavering with time and circumstance. That AI could provide prosthetics (or orthotics) for human agency feels unrealistic here, not least because ‘answers’ would be largely unverifiable. Ethically, (...) the concern is that AI stands to frack our humanity. We form a fragile ecosystem of ethical subjects, our responsiveness to others’ suffering, enabled by our own. To deliberate together for incapacitated others is among those solemn privileges that verify our humanity. Having AI mine these delicate pain-forests risks treating our suffering as the new oil—to be extracted and exploited, but beyond our vision and at our cost. Let’s briefly develop each idea, starting with the how/why distinction. This is palpable, even for more prosaic questions like how or why to drive. The former admits of increasingly sophisticated technological fixes and nudge; the latter often remains very particular and personal. How much greater then, the difference between …. (shrink)

‘Trust but verify’ is a translation of a Russian proverb made famous by former US President Ronald Reagan. In their paper, Grahamet alappear to take an alternate view that might be summarised astrust or verify. The contrast highlights a general question: how do we come to trust in authorities? More specifically, Grahamet alclaim: (1) that UK Trusted Research Environments (TREs) are misnamed as future custodians for big health data because their promised verification systems actually negate the uncertainty that trust requires; (...) (2) the public is mistaken if it believes such verification enhances trust; (3) the notion of building public trust in TREs is unclear or misconceived. In response, I propose a more relational, perhaps less reductionist account. I argue (1) that verification is itself a source of uncertainty, so it can’t extinguish the uncertainty needed for trust; (2) it’s nevertheless possible for verification to enhance feelings of trust thereby reducing our needs for the same; (3) trust is also social, even political, meaning institutions like TREs may become too big to fail—and end up shielding their ‘trusted’ brand by being less candid about inevitable flaws in their verification systems. (shrink)

In this article, I critique the commonly accepted distinction between commercial and altruistic surrogacy arrangements. The moral legitimacy of surrogacy, I claim, does not hinge on whether it is paid (‘commercial’) or unpaid (‘altruistic’); rather, it is best determined by appraisal of virtue-abiding conditions constitutive of the surrogacy arrangement. I begin my article by problematising the prevailing commercial/altruistic distinction; next, I demonstrate that an assessment of the virtue-abiding or non-virtue-abiding features of a surrogacy is crucial to navigating questions about the (...) moral legitimacy of surrogacy; in the final part, I reject other moral heuristics that might be proposed as alternatives to the commercial/altruistic dichotomy, and reiterate that a virtue-ethical framework is the most suitable way forward. (shrink)

Recently, Jardas _et al_ have convincingly defended the patient preference predictor (PPP) against a range of autonomy-based objections. In this response, I propose a new autonomy-based objection to the PPP that is not explicitly discussed by Jardas _et al_. I call it the ‘objection from higher-order preferences’. Even if this objection is not sufficient reason to reject the PPP, the objection constitutes a pro tanto reason that is at least as powerful as the ones discussed by Jardas _et al._.

In response to Ferrario _et al_’s 1 work entitled ‘Ethics of the algorithmic prediction of goal of care preferences: from theory to practice’, we would like to point out an area of concern: the risk of artificial intelligence (AI) paternalism in their proposed framework. Accordingly, in this commentary, we underscore the importance of the implementation of safeguards for AI algorithms before they are deployed in clinical practice. The goal of documenting a living will and advanced directives is to convey personal (...) preferences regarding the acceptance of therapies, including life support, for future use in case of losing one’s capacity. This is standard practice in the care of incapacitated critically ill patients as it is considered to extend the individual’s autonomy. Notably, most of the documents that intensivists encounter in clinical practice are written in a generic fashion and lack context. This problem usually leads to the reliance on... (shrink)

I am grateful for these four wide-ranging and incisive commentaries on my paper discussing the ethical issues that arise when we consider the carbon footprint of inhalers.1 As I am unable to address every point raised, instead I focus on what I take to be the common thread running through these papers. Each response has something to say regarding the scope of healthcare’s responsibility to mitigate climate change. This can be explored at the intuitional or structural level, or at the (...) individual patient and practitioner level leading to a further issue of the relationship between these perspectives. Coverdale argues for broadening the scope of individual responsibilities regarding the climate.2 Discussing inhalers does not go far enough and doctors, argues Coverdale, are well placed to draw attention to the various behaviour changes patients can undertake both through role modelling and in the clinic. While Coverdale makes some excellent points, I have three worries about his proposal. One is relevance. Climate concerns may not always be pertinent in the clinical encounter; think of counselling a bereaved patient or somebody needing a fit note. Related to this is opportunity. General practitioners capacity to cover an inordinate amount in a 10 min consultation …. (shrink)

ObjectivePhysical and mental well-being are threatened by climate change. Since hospitals in high-income countries contribute significantly to climate change through their greenhouse gas (GHG) emissions, the medical ethics imperative of ‘do no harm’ imposes a responsibility on hospitals to decarbonise. We investigated hospital stakeholders’ perceptions of hospitals’ GHG emissions sources and the sense of responsibility for reducing GHG emissions in a hospital.MethodsWe conducted 29 semistructured qualitative expert interviews at one of Germany’s largest hospitals, Heidelberg University Hospital. Five patients, 12 clinical (...) and 12 administrative employees on different levels were selected using purposive maximum variation sampling. Interviews were transcribed verbatim and analysed using the framework approach.ResultsConcerning GHG emissions, hospital stakeholders perceived energy and waste as most relevant emission sources followed by mobility. Climate change mitigation in general was considered as important. However, in their role as patients or employees, hospital stakeholders felt less responsible for climate change mitigation. They saw providing best possible medical care to be the top priority in hospitals and were often concerned that patients’ health could be jeopardised by climate change mitigation measures.ConclusionPerceptions of most important emission sources did not coincide with those in literature, highlighting the need to inform stakeholders, for instance, about pharmaceuticals as important emission source. A frequently perceived conflict between reducing emissions and providing high-quality medical care could be eased, if reducing emissions would not only be justified as a contribution to mitigation, but also as a contribution to preventing ill health—a basic principle of medical ethics. (shrink)

Tensions between respect for autonomy and paternalism loom large in Ferrario et al ’s discussion of artificial intelligence (AI)-based preference predictors.1 To be sure, their analysis (rightfully) brings out the moral matter of respecting patient preferences. My point here, however, is that their consideration of AI-based preference predictors in treatment of incapacitated patients opens more fundamental moral questions about the desirability of over-ruling considered patient preferences, not only if these are disclosed by surrogates, but possibly also in treating competent patients. (...) I do not advocate such an evolution—the moral desirability of that calls for a much broader debate, one in which the meaning of ‘doing good’ in medicine, and how this intersects with normative views on ‘the goal(s) of medicine’ would be central elements. While my aim in this piece is more modest, I nonetheless hope to approach it sideways, by indicating how the contribution by Ferrario et al reopens discussion about paternalism and the normativity of preferences in medicine. This follows from what these authors give as reason for endorsing this technology in care for incapacitated patients. Their argument for employing such tools in case of incapacitation is based on the premise that advice of surrogate decision-makers about care preferences is suboptimal because of their biased perception …. (shrink)

In their contribution ‘Ethics of the algorithmic prediction of goal of care preferences’1 Ferrario et al elaborate a from theory to practice contribution concerning the realisation of artificial intelligence (AI)-based patient preference prediction (PPP) systems. Such systems are intended to help find the treatment that the patient would have chosen in clinical situations—especially in the intensive care or emergency units—where the patient is no longer capable of making that decision herself. The authors identify several challenges that complicate their effective development, (...) application and evaluation—and offer solutions to them. One of these issues is the question of who should ultimately use said systems. While it is undisputed that clinicians should use these AI systems for their decision-making process, there is an ongoing debate about whether next of kin should use them as well. The authors advocate that ‘’access should be provided to both clinicians and loved ones with due explanations and as desired’. We will disagree with this assessment and explain in our commentary why it is important that surrogates provide their own assessments with as little external (AI) influence as possible. Why do next of kin actually participate in the process of preference finding and treatment decision-making? A key reason is that clinicians usually …. (shrink)

It is well established that demographic representation in clinical research is important for understanding the safety and effectiveness of novel therapeutics and vaccines in diverse patient populations. In recent years, the National Institutes of Health and Food and Drug Administration have issued guidelines and recommendations for the inclusion of women, older adults, and racial and ethnic minorities in research. However, these guidelines fail to provide an adequate explanation of why racial and ethnic representation in clinical research is important. This article (...) aims to both provide the missing arguments for why adequate representation of racial and ethnic minorities in clinical research is essential and to articulate a number of recommendations for improving diversity going forward.Appropriate racial and ethnic representation and fair inclusion help (1) increase the generalisability of clinical trial results, (2) equitably distribute any benefits of clinical research and (3) enable trust in the research enterprise. (shrink)

Most jurisdictions require a patient to consent to any medical intervention. Clinicians ask a patient, ‘Given the pain and distress associated with our intervention and the predicted likelihood of this best-case outcome, do you want to accept the treatment?’ When a patient is incapable of deciding, clinicians may ask people who know the patient to say what the patient would decide; this is substituted judgement. In contrast, asking the same people to say how the person would make the decision is (...) substituted interests.1 The UK Mental Capacity Act 2005 uses the latter approach, and my comments appertain to that approach. When a patient lacks capacity, the question facing clinicians is, ‘Given the likely outcome of this treatment plan for the patient’s life in the long term, would the patient decide to accept the plan?’ This answer depends on the patient’s wishes, values and other factors they would use when deciding. The proposed development of an algorithm involves the following:2. (shrink)

Drawing on the principle of subsidiarity, this article develops a framework for allocating medical decision-making authority in the absence of capacity to consent and argues that decisional authority in paediatric transgender healthcare should generally lie in the patient. Regardless of patients’ capacity, there is usually nobody better positioned to make medical decisions that go to the heart of a patient’s identity than the patients themselves. Under the principle of subsidiarity, decisional authority should only be held by a higher level decision-maker, (...) such as parents or judges, if lower level decision-makers are incapable of satisfactorily addressing the issue even with support and the higher level decision-maker is better positioned to satisfactorily address the issue than all lower level decision-makers. Because gender uniquely pertains to personal identity and self-realisation, parents and judges are rarely better positioned to make complex medical decisions. Instead of taking away trans youth’s authority over their healthcare decisions, we should focus on supporting their ability to take the best possible decision for themselves. (shrink)

When weighing up which inhaler to prescribe, a doctor may prioritise a patient’s preferences over the expected harms from the associated carbon emissions. Parker argues that this is wrong.1 Doctors have a pro-tanto duty to switch from a high-carbon metered-dose inhaler (MDI) to a low-carbon dry-powdered inhaler (DPI)—even though this provides no direct patient benefit—unless switching would undermine trust or significantly worsen a patient’s health. He goes on to state that even if DPIs are more expensive for the National Health (...) Service (NHS) then this is justified so long as it does not ‘significantly threaten’ the NHS’ ability to protect and promote health. This may appear to be a radical proposal, challenging the ethical principles of autonomy, health entitlements and justly distributed resources. However, we will claim that it is only radical in so far as one perceives (A) patient autonomy and healthcare entitlements as existing within a vacuum, unrelated to other foundational ethics concerns and (B) the health consequences of a given healthcare budget are limited solely to the designated recipients rather than all affected parties. Here, we test the claim that our responsibility for promoting patient autonomy …. (shrink)

In an accompanying feature article, Parker argued that general practitioners should support efforts by the National Health Service to reduce greenhouse gases by avoiding metered-dose inhalers and by prescribing similarly effective inhalers with smaller carbon footprints.1 He also argued that patients are not morally justified in declining to use dry powder inhalers which do not contain greenhouse gases and when judged to be readily available and similarly effective, unless, when patients resist that option, their trust in the professional relationship is (...) undermined.1 Prescribers should, therefore, take account of factors not only concerning the benefits and costs to individual patients including the strength of the professional relationship, but broader social considerations including potential effects on climate change and planetary health. In this commentary, I present three additional factors to broaden the context of Parker’s excellent analysis. The first is that a discussion with patients on the effects of various forms of inhalers on the environment may bring to their attention the seriousness of anthropogenic climate change and open opportunities …. (shrink)

Perry Hendricks’ ‘impairment argument’, which he has defended in this journal, is intended to demonstrate that the generally conceded wrongness of giving a fetus fetal alcohol syndrome (FAS) shows that abortion must also be immoral, even if we allow that the fetus is not a rights-bearing moral person. The argument fails because the harm of causing FAS is extrinsic but Hendricks needs it to be intrinsic for it to show anything about abortion. Either the subject of the wrong of causing (...) FAS is a person who does not exist in the case of abortion or the wrong is negligible. (shrink)

Almost any medicine can be purchased online from abroad. Many high-income countries permit individuals to import medicines for their personal use. However, those who import medicines face the risk of purchasing poor-quality products that may not work, or that may even harm them. Many people are willing to accept this risk for the opportunity to purchase more affordable medicines. This is especially true of individuals from low socioeconomic backgrounds who already struggle to afford the medicines they need if they are (...) not subsidised by insurers or if copayments are high. As medicine prices and out-of-pocket healthcare spending continue to climb, the online marketplace provides an important alternative for individuals in high-income countries to source medicines. In this article, I argue that doctors have a responsibility to help patients access medicines online and I propose a framework that can be used to facilitate responsible personal importation. (shrink)

Parker’s article is a welcome attempt to address the importance of environmental sustainability in the realm of clinical ethics.1 We support the recent movement to seriously consider the environmental impact of healthcare institutions in bioethics.2 3 Still, we find two partly linked weaknesses of Parker’s analysis and guideline suggestion. These relate to a need in ‘green’ bioethics to see beyond the normal healthcare ethical focus on health-related values related to individual patients, and to primarily adopt institutional ways of framing central (...) decision problems. Traditional bioethics applies a restricted scope of values to assess clinical decisions: primarily health-related patient well-being (including life) and patient autonomy. If a decision improves (or, as in Parker’s inhaler case, maintains) a patient’s health-related well-being, this supports it. However, if a decision improves a patient’s non health-related well-being, say, winning a beauty contest or securing a job by having cosmetic surgery, it is not supported. And so on. This idea of healthcare as, in Michael Walzer’s classic terminology, a separate ‘sphere of justice’ has two interrelated limitations: it reflects a bias towards individual patients over other people, and it restricts the scope of values allowed to influence healthcare ethical judgements. These limitations appear once we see that the issue addressed by Parker can be framed either as prescription decisions taken by individual doctors against the background of …. (shrink)

Commitment devices (CDs) can help people overcome self-control problems to act on their plans and preferences. In these arrangements, people willingly make one of their options worse in order to change their own future behaviour, often by setting aside a sum of money that they will forfeit it if they fail to complete the planned action. Such applications of behavioural science have been used to help people stick to healthier lifestyle choices, overcome addictions and adhere to medication; they are acceptable (...) to many patients and even relatively small sums can be effective. Some authors have objected to the use of nudges in healthcare. Engelen has listed nine potential objections to nudges in relation to means (why nudge rather than persuade?), ends (what action is being promoted?) and agents (who is nudging whom?). These objections are shown to lack force in the context of CDs. Instead, an analysis specific to the ethical issues in CDs is employed. CDs exclude certain groups including so-called ‘naifs’ and risk increasing health inequality. CDs may promote the wrong behaviour and people might legitimately change their minds. Intermediaries might encounter perverse incentives. Approaches to overcoming these problems are described and eight key ethical considerations for those considering implementing CDs in the future are described. Altogether this paper illustrates the advantages of appraising the ethics of behavioural science in medicine on a case-by-case basis. (shrink)

Ransomware attacks on healthcare systems are becoming more prevalent globally. In May 2021, Waikato District Health Board in New Zealand was devastated by a major attack that crippled its information technology system. The Department of Orthopaedic Surgery faced a number of challenges to the way they delivered care including, patient assessment and investigations, the deferral of elective surgery, and communication and patient confidentiality. These issues are explored through the lens of the four key principles of medical ethics in the hope (...) that they will provide some guidance to future departments who may experience such attacks. (shrink)

Since the 1980s, there has been an increasing acknowledgement of the importance of recognising the ethical dimension of clinical decision-making. Medical professional regulatory authorities in some countries now include ethical knowledge and practice in their required competencies for undergraduate and post graduate medical training. Educational interventions and clinical ethics support services have been developed to support and improve ethical decision making in clinical practice, but research evaluating the effectiveness of these interventions has been limited. We undertook a systematic review of (...) the published literature on measures or models of evaluation used to assess the impact of interventions to improve ethical decision making in clinical care. We identified a range of measures to evaluate educational interventions, and one tool used to evaluate a clinical ethics support intervention. Most measures did not evaluate the key impact of interest, that is the quality of ethical decision making in real-world clinical practice. We describe the results of our review and reflect on the challenges of assessing ethical decision making in clinical practice that face both developers of educational and support interventions and the regulatory organisations that set and assess competency standards. (shrink)

Pathology and laboratory medicine are a key component of a patient’s healthcare. From academic care centres, community hospitals, to clinics across the country, pathology data are a crucial component of patient care. But for much of the modern era, pathology and laboratory medicine have been absent from health policy conversations. Though select members in the field have advocated for an enhanced presence of these specialists in policy conversations, little work has been done to thoroughly evaluate the moral and ethical obligations (...) of the pathologist and the role they play in healthcare justice and access to care. In order to make any substantive improvements in access to care, pathology and laboratory medicine must have a seat at the table. Specifically, pathologists and laboratorians can assist in bringing about change through improving clinician test choice, continuing laboratory improvement programmes, promoting just advanced diagnostic distribution, triage testing and be good stewards of healthcare dollars, and recruiting a more robust laboratory workforce. In order to get to that point, much work has to be done in pathology education and the laboratory personnel training pipeline but there also needs to be adjustments at the system level to better involve this invaluable group of specialists in these policy conversations. (shrink)

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as ‘Long COVID-19’. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a multidisciplinary (...) approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research. (shrink)

When a minor research participant reaches the age of majority or the level of maturity necessary to be granted legal decision-making capacity, reconsent can be required for ongoing participation in research or use of health information and banked biological materials. Despite potential logistical concerns with implementation and ethical questions about the trade-offs between maximising respect for participant agency and facilitating research that may generate benefits, reconsent is the approach most consistent with both law and research ethics.Canadian common law consent requirements (...) are expansive and likely compel reconsent on obtaining capacity. Common law doctrine recognises that children are entitled to decision-making authority that reflects their evolving intelligence and understanding. Health consent legislation varies by province but generally either compels reconsent on obtaining capacity or delegates the ability to determine reconsent to research ethics boards. These boards largely rely on the Canada’s national ethics policy, the Tri-Council Policy Statement, which states that, with few exceptions, reconsent for continued participation is required when minors gain capacity that would allow them to consent to the research in which they participate. A strict interpretation of this policy could require researchers to perform frequent capacity assessments, potentially presenting feasibility concerns. In addition, Canadian policy and law are generally consistent with the core principles of key international ethical standards from the United Nations and elsewhere.In sum, reconsent of paediatric participants upon obtaining capacity should be explicit and informed in Canada, and should not be presumed from continued participation alone. (shrink)

Health, ethics and COP27 On the 20 November 2022, the United Nations Climate Change COP27 announced a breakthrough agreement to provide ‘loss and damage’ funding for resource-poor countries seriously affected by climate change. 1 The establishment of the funding stream acknowledges, and attempts to address, one of many thorny ethical issues driven by climate change – to what extent countries that have benefited economically from past emissions of greenhouse gases owe reparative obligations to countries who have contributed minimally to climate (...) change but are most at risk of its harms? One of the many reasons why this is such an important breakthrough is that it brings into the centre of climate policy-making questions of global – and intergenerational – justice and fairness. It acknowledges the critical importance of ethics in climate change deliberations. It is probably fair to say that climate change policy has been dominated to... (shrink)

The National Health Service (NHS) was the first healthcare system globally to declare ambitions to become net carbon zero. To achieve this, a shift away from metered-dose inhalers which contain powerful greenhouse gases is necessary. Many patients can use dry powder inhalers which do not contain greenhouse gases and are equally effective at managing respiratory disease. This paper discusses the ethical issues that arise as the NHS attempts to mitigate climate change. Two ethical issues that pose a barrier to moving (...) away from metered-dose inhalers are considered: patients who decline an inhaler with a smaller carbon footprint and increased cost. I argue that while a patient is not morally justified in refusing a more environmentally sustainable inhaler due to the expected harms, a doctor may still prescribe a metered-dose inhaler if they believe that switching without consent might undermine trust or substantially worsen the patient’s health. Turning to cost, I argue that the imperative to combat climate change means the NHS should accept small increased financial costs for lower carbon inhalers, even though this provides no additional direct benefit for the patient. I then go on to consider the implications of the preceding analysis for policy and practice. I argue for a policy that minimises the impact of inhalers on the climate by advocating for a principle of environmental prescribing and explore decision-making in practice. While the arguments here pertain primarily to inhalers, the discussion has broader implications for debates around healthcare’s responsibility to be environmentally sustainable. (shrink)

Electroencephalographic monitoring provides critical diagnostic and management information about patients with epilepsy and seizure mimics. Admission to an epilepsy monitoring unit (EMU) is the gold standard for such monitoring in major medical facilities worldwide. In many countries, access can be challenged by limited resources compared to need. Today, triaging admission to such units is generally approached by unwritten protocols that vary by institution. In the absence of explicit guidance, decisions can be ethically taxing and are easy to challenge. In an (...) effort to address this gap, we propose a two-component approach to EMU triage that takes into account the unique landscape of epilepsy monitoring informed by triage literature from other areas of medicine. Through the strategic component, we focus on the EMU wait list management infrastructure at the institutional level. Through the principled component, we apply a combination of the ethical principles of prioritarianism, utilitarianism and justice to triage; and we use individual case examples to illustrate how they apply. The effective implementation of this approach to specific epilepsy centres will need to be customised to the nuances of different settings, including diverse practice patterns, patient populations and constraints on resource distribution, but the conceptual consolidation of its components can alleviate some of the pressures imposed by the complex decisions involved in EMU triage. (shrink)

Joshua Parker’s article on green inhaler prescribing is important and timely. I agree with much of it, specifically regarding the institutional duty to make climate-friendly changes (from environmentally expensive prescriptions to ‘greener,’ similarly effective ones). The challenge, however, comes in determining how that institutional obligation impacts the rights and duties of patients. In this commentary, I want to offer a friendly alternative to Parker’s view of individual patient obligation, which I suggest is important for reasons that go beyond this one (...) case. Parker’s broad view is that, because metered-dose inhalers (MDIs) emit far more greenhouse gases (GHG) than do dry powder inhalers (DPIs), and the two are equally effective for most patients, the healthcare system should switch most patients on MDIs to DPIs, and the patients have a pro tanto duty to accept this change.1 The problem is that no individual inhaler use causes harmful climate change, and so it is difficult to explain a duty not to use MDIs. It seems that my individual behaviour ‘makes no difference’ to climate change, so familiar more principles have a difficult time justifying a prohibition of such behaviour. Parker’s response to this worry fits into the consequentialist tradition,2 3 as he argues that each individual contribution to climate change causes some amount of ‘expected harm,’ because it contributes a little bit to future climate changes which will cause harm. And since we have a duty to minimise expected harm, we have a duty not to make such small contributions to climate change. I think we should be sceptical of this sort of argument. It makes the most sense if we endorse a bathtub metaphor, in which the atmosphere is like a bathtub, and once it is full, every …. (shrink)

I offer a response to an objection to my account of the moral difference between fetuses and newborns, an account that seeks to address an analogy between abortion and infanticide which is based on the apparent equality of moral value of fetuses and newborns.

In ‘My body, not my choice: against legalised abortion’, Hendricks offers an intriguing argument that suggests the state can coerce pregnant women into continuing to sustain their fetuses. His argument consists partly in countering Boonin’s defence of legalised abortion, followed by an argument from analogy. I argue in this response article that his argument from analogy fails and, correspondingly, it should still be a woman’s legal choice to have an abortion. My key point concerns the burdensomeness of pregnancy which is (...) morally relevant to the question of whether the state can coerce people to use their bodies to help another person. (shrink)

Since the publication of the successful animal trials of the Biobag, a prototypical extrauterine support for extremely premature neonates, numerous ethicists have debated the potential implications of such a device. Some have argued that the Biobag represents a natural evolution of traditional newborn intensive care, while others believe that the Biobag would create a new class of being for the patients housed within. Kingma and Finn argued inBioethicsfor making a categorical distinction between fetuses, newborns and ‘gestatelings’ in a Biobag on (...) the basis of a conceptual distinction between ectogenesis versus ectogestation. Applying their arguments to the clinical realities of newborn intensive care, however, demonstrates the inapplicability of their ideas to the practice of medicine. Here, I present three clinical examples of the difficulty and confusion their argument would create for clinicians and offer a possible remedy: namely, discarding the term ‘artificial womb’ in favour of ‘Biobag’. (shrink)

Artificial intelligence (AI) and its introduction into clinical pathways presents an array of ethical issues that are being discussed in the JME. 1–7 The development of AI technologies that can produce text that will pass plagiarism detectors 8 and are capable of appearing to be written by a human author 9 present new issues for medical ethics. One set of worries concerns authorship and whether it will now be possible to know that an author or student in fact produced submitted (...) work. That seems likely to be a general worry for secondary and higher education, as well as for all academic journals. Thus far generative AI chatbots do not seem to be able to produce a fully referenced and well-argued ethics article, but they probably could generate a blog or student essay that would... (shrink)

Hersey et al have outlined a proposed ethical framework for assessing abortion policies that locates the effect of government legislation between the provider and the patient, emphasising its influence on interactions between them. They claim that their framework offers an alternative to the personal moral claims that lie behind legislation restricting abortion access. However, they fail to observe that their own understanding of reproductive justice and the principles of medical ethics are similarly predicated on their individual moral beliefs. Consequently, the (...) conclusions obtained from their framework are also derived from their individual beliefs, and have no claim to being objective. (shrink)

Smajdor argues that “recognition” is the solution to the “reifying attitude” that results from “the urge to protect ‘vulnerable’ people through exclusion from research”. Drawing on theories of reification, we argue that it is the concepts of autonomy and vulnerability themselves that have been reified, resulting in the impoverishment of approaches to autonomy at law and in research ethics. Overcoming such reification demands a deeper consideration of the grounds on which vulnerable individuals are owed recognition and thereby the forms such (...) recognition should take. Smajdor argues for a recognition that appeals to autonomy and that manifests in providing vulnerable individuals with the opportunity to assent. The problem is that this kind of recognition is dependent on a more fundamental kind. It is this second form of recognition that would need to do the heavy lifting for assent-based frameworks to avoid the same problems we find with consent. (shrink)

There is an ongoing debate about whether multifetal pregnancy reduction from twins to singletons (2-to-1 MFPR) is morally permissible. By applying the all or nothing problem to the cases of reducing twin pregnancies to singletons, Räsänen argues that an implausible conclusion seems to follow from two plausible claims: (1) it is permissible to have an abortion and (2) it is wrong to abort only one fetus in a twin pregnancy. The implausible conclusion is that women considering 2-to-1 MFPR for social (...) reasons ought to abort both fetuses rather than just one. To avoid the conclusion, Räsänen suggests that it is best to carry both fetuses to term and give one for adoption. In this article, I argue that Räsänen’s argument fails for two reasons: the inference from (1) and (2) to the conclusion rests on a bridge principle that does not work in certain circumstances, and there is good reason to reject the claim that it is wrong to abort only one fetus. (shrink)