In the UK, healthcare workers are again considering whether to strike, and the moral status of strike action is being publicly debated. Mpho Selemogo argued that we can think productively about the ethical status of healthcare strikes by using the ethical framework often applied to armed conflict (2014). On this view, strikes need to be just, proportionate, likely to succeed, a last resort, pursued by a legitimate organisation and publicly communicated. In this article, I argue for a different approach to (...) the just war comparison. Selemogo adopts a traditional, collectivist conception of just war reasoning but this is not the only view. So-called ‘individualist’ approaches to the morality of war can also be applied to strike action. Taking an individualist perspective complicates the traditional picture of a dispute arising between three well-defined groups of healthcare workers, employers and the innocent subjects of collateral damage: patients and the public. We arrive instead at a more complicated moral picture: some people might be more morally liable to be harmed than others during a strike, or can justly bear increased risks, and some are more obliged to strike than others. I describe this shift of framework before critically examining some of the traditionaljus ad bellumconditions as applied to strikes. (shrink)

In late 2021, tennis star Chris Evert learned new genetic information about her sister, who died from ovarian cancer in January 2020. As Evert has explained in posts published by ESPN, her sister had a variant in the BRCA1 gene that was reclassified—upgraded—from a variant of uncertain significance (VUS) to pathogenic. Hearing about the variant’s reclassification likely saved Evert’s life. After getting genetic testing that showed she also carried the variant, Evert underwent prophylactic surgery. Clinical testing associated with the procedure (...) revealed she already had stage 1c ovarian cancer. The Wall Street Journal reported on a different variant reclassification story in 2019. Seven female relatives had prophylactic surgeries after cascade genetic testing indicated they each carried the same pathogenic variant in BRCA2. However, there was significant distress and confusion when one of the women received notice that the variant had been downgraded from pathogenic to a VUS. As these cases illustrate, reclassification of the clinical significance of genetic variants—which ranges from pathogenic, likely pathogenic, uncertain, likely benign and benign—can have profound impacts on individuals and families. Although genetic testing often provides valuable information, many identified variants are of uncertain significance, even in genes associated with disease. Many of these VUS will be reclassified as genomic data …. (shrink)

BackgroundPatients not attending their appointments without giving notice burden healthcare services. To reduce non-attendance rates, patient non-attendance fees have been introduced in various settings. Although some argue in narrow economic terms that behavioural change as a result of financial incentives is a voluntary transaction, charging patients for non-attendance remains controversial. This paper aims to investigate the controversies of implementing patient non-attendance fees.ObjectiveThe aim was to map out the arguments in the Norwegian public debate concerning the introduction and use of patient (...) non-attendance fees at public outpatient clinics.MethodsPublic consultation documents (2009–2021) were thematically analysed (n=84). We used a preconceived conceptual framework based on the works of Grant to guide the analysis.ResultsA broad range of arguments for and against patient non-attendance fees were identified, here referring to the acceptability of the fees’ purpose, the voluntariness of the responses, the effects on the individual character and institutional norms and the perceived fairness and comparative effectiveness of patient non-attendance fees. Whereas the aim of motivating patients to keep their appointments to avoid poor utilisation of resources and increased waiting times was widely supported, principled and practical arguments against patient non-attendance fees were raised.ConclusionA narrow economic understanding of incentives cannot capture the breadth of arguments for and against patient non-attendance fees. Policy makers may draw on this insight when implementing similar incentive schemes. The study may also contribute to the general debate on ethics and incentives. (shrink)

InWhere the Ethical Action Is,we argued that medical and ethical modes of thought are not different in kind but different aspects of a situation. One of the consequences of this argument is that the requirement for or benefits of normative moral theorising in bioethics is undercut. In response, Wagner has argued that normative moral theories should be reconceived as models. Wagner’s argument seems to be that once reconceived as models, the rationale for moral theorising, undercut by our arguments inWhere the (...) Ethical Action Is,will be re-established because we will see those moral-theories-now-rebranded-as-models as serving a role akin to the role models serve in some of the natural sciences. In this response to Wagner, we provide two arguments against Wagner’s proposal. We call these arguments the Turner-Cicourel Challenge and the Question Begging Challenge. (shrink)

Humans and other species depend on the planet’s well-being to survive and flourish. The health of the planet and its ecosystems is under threat from anthropogenic climate change, pollution and biodiversity loss. The promotion of planetary health against entrenched degradation of nature urgently requires ethical guidance. Using an ecocentric virtue jurisprudence approach, this article argues that the highest end of safeguarding planetary health is to secure the flourishing of the Earth community, of which the flourishing of humanity is but one (...) component. The article demonstrates how law, despite its historic role in facilitating our present planetary crisis, has an untapped potential to redeem itself by promoting planetary flourishing through the creation of conditions conducive to the practice of moral virtues, which can help meet the challenges of the Anthropocene. Once given an ecocentric interpretation, the cardinal virtues of prudence, justice, courage and moderation, as well as their subvirtues, can justify or produce legal structures that address everything from the human right to a healthy environment to the rights of nature. (shrink)

Digitalisation of health and the use of health data in artificial intelligence, and machine learning (ML), including for applications that will then in turn be used in healthcare are major themes permeating current UK and other countries’ healthcare systems and policies. Obtaining rich and representative data is key for robust ML development, and UK health data sets are particularly attractive sources for this. However, ensuring that such research and development is in the public interest, produces public benefit and preserves privacy (...) are key challenges. Trusted research environments (TREs) are positioned as a way of balancing the diverging interests in healthcare data research with privacy and public benefit. Using TRE data to train ML models presents various challenges to the balance previously struck between these societal interests, which have hitherto not been discussed in the literature. These challenges include the possibility of personal data being disclosed in ML models, the dynamic nature of ML models and how public benefit may be (re)conceived in this context. For ML research to be facilitated using UK health data, TREs and others involved in the UK health data policy ecosystem need to be aware of these issues and work to address them in order to continue to ensure a ‘safe’ health and care data environment that truly serves the public. (shrink)

We agree with McCullough, Coverdale and Chervenak1 that ‘medical educators and academic leaders are in a pivotal and powerful position to role model’ to counter ‘incivility’ in medicine, which can include ‘dismissing’ or ‘demeaning others’. They note that ‘women may be at greater risk for experiencing incivility compared with men’, as may other individuals who experience ‘patterns of disrespect based on minority status’. The authors promote ‘professionalism’ and ‘etiquette’ to foster civility within medicine. Yet theory and experience suggest that medical (...) educators and academic leaders are also in powerful positions to mobilise these concepts to perpetuate exclusions from, and biases within, medicine, upholding racist, sexist and ableist norms. Feminist methodology reveals how ethical theorising historically excluded views and experiences of marginalised individuals and groups and provides frameworks for interrogating supposedly universal norms. Presuming dominant values and experiences reflect universal ones can further marginalise already oppressed groups and individuals. A feminist analysis reveals how ‘professionalism’ or ‘etiquette’ are historically shaped by white or male identity and experience, including norms of attire, hair, accessories, speech or behaviour. Part of the hidden curriculum of medicine becomes intuiting how leaders implicitly or explicitly define ‘professionalism’. McCullough et al define ‘professionalism’ in medicine as ‘sustained commitments to scientific and clinical excellence… making the protection and promotion of health-related interest the physician’s primary concern …. (shrink)

Health will feature more prominently at this year’s United Nations Conference of the Parties (COP) to the Framework Convention on Climate Change. COP281 will include a ‘Health/Relief/Recovery and Peace’ day on the 3 December. The health day inevitably engages issues of equity and justice. It includes perspectives on identifying and scaling up adaption measures to address health impacts of climate change, acknowledging ‘findings that climate-sensitive health risks are disproportionately felt by the most vulnerable and disadvantaged, including women, children, ethnic minorities, (...) lower-income communities, migrants or displaced persons, older populations, and those with underlying health conditions’; reflections on what is known and not understood about the impacts of climate change on mental health, and potential ways to address this; ‘action-oriented’ look at responses to the ‘unprecedented levels of climate and disaster displacement, including on those communities already facing multiple crisis’; and an opportunity to share best practice approaches to advocacy and action at the intersection of climate and health. The full programme for the ‘health/relief/recovery and peace’ day can be found at www.cop28.com/en/health-events. A political declaration is anticipated on the day as ministers of health, environment, finance and other related sectors meet and set out a ‘roadmap’ and seek to embed health in the climate agenda. In the lead up to COP28, the WHO called on Ministers of Health ‘to …. (shrink)

While Gabriel Watts and Ainsley Newson argue that diagnostic laboratories do not have a general duty to routinely reinterpret genomic variant classifications, they do formulate several restricted duties to actively reinterpret specific types of classifications.1 They place these duties with laboratories, acknowledging that they are setting aside any responsibilities that might arise for clinicians. Here, we will discuss the implications of this obligation for clinicians and the moral tension it may confront them with. We focus in particular on the consequences (...) of the proposed moral obligation to actively reinterpret variant classifications that carry a higher risk of being false positives. Such reclassification is likely to result in ‘downgrades’: previously pathogenic variants (pathogenic/likely pathogenic, P/LP) reclassified to benign (likely benign/benign, LB/B) or uncertain variants (variant of uncertain significance, VUS). Any laboratory policy to actively reinterpret (specific sets of) classifications will confront the clinician with the question whether the person tested should be recontacted on a reinterpretation of previously reported results. As others have pointed out, recontacting in general comes with challenges, since patients may not want to be recontacted or have forgotten about their genetic test.2 3 Recontacting in case of a downgrade, however, is particularly impactful. Previous studies on the psychosocial impact of reclassification on patients …. (shrink)

The Organ Donation Act 2019 has introduced an opt-out organ donor register in England, meaning that consent to the donation of organs upon death is presumed unless an objection during life was actively expressed. By assessing the rights of the dead over their organs, the sick to those same organs, and the role of consent in their requisition, this paper interrogates whether such paradigms for deceased organ donation are ethically justifiable. Where legal considerations are applicable, I focus on the recent (...) changes in England as a case in point; however, this paper ultimately challenges the justifiability of opt-out systems in any form, concluding that ethical solutions to organ shortage do not lie in opt-out systems of deceased organ procurement. (shrink)

In their article on the limited duty to reinterpret genetic variants, Watts and Newson argue that clinical labs are not morally obligated to conduct routine reinterpretation despite its potential clinical and personal value.1 We endorse the authors’ argument for a circumscribed duty to reclassify genomic variants in certain cases, including to promote diagnostic equity for racial and ethnic minority populations that have been historically excluded from and exploited by genomic research and medicine. However, given the history and resilience of scientific (...) racism, the use of socially constructed racial and ethnic categories to enhance diagnostic equity raises several ethical and practical challenges. In the short term, using socially constructed racial and ethnic categories to identify patients for variant reclassification is a practical approach for addressing concerns of diagnostic equity. In contrast, diagnostic accuracy depends on patients’ genetic similarity to reference genomes, rather than their socially determined race or ethnicity.2 Thus, in the long term, securing both diagnostic equity and diagnostic accuracy through targeted variant reclassification will require a shift away from relying on race and ethnicity and towards assessing genetic similarity. Critically, the identification of patients for genomic variant reclassification using socially constructed race or ethnicity runs the risk of perpetuating the harmful …. (shrink)

The World Health Organization (WHO) is currently in advanced stages of developing a ‘WHO convention, agreement, or other international instrument on pandemic prevention, preparedness and response’ (also known as WHO CA+, referred to below as: Pandemic Agreement). 1 Rightly, the instrument places equity at the centre. Yet, it currently also omits reference to an impactful tool to promote equity that has been adopted in an unprecedented manner during COVID-19—a set of measures known as disadvantage indices. Embedding disadvantage indices would provide (...) concrete constructive guidance; align the Pandemic Agreement with the use of indices by other United Nations (UN) agencies; help realise the Agreement’s goal of addressing social and other determinants of health within countries, and furthermore offer feasible ways improving equity in allocation across countries. WHO member states began work on a Pandemic Agreement in December 2021. The current timeline envisages a final version to be considered by... (shrink)

In February 2022, the Court of Protection was faced with the question of whether a kidney transplant was in the best interests of William Verden. The case highlighted the legal, ethical and clinical complexities of treating potential kidney transplant patients with impaired decision-making. Above all, it exposed the potential risk of discrimination on the basis of disability when treatment decisions in relation to potential kidney recipients with impaired capacity are being made. In this paper, we draw on the Verden case (...) to (1) examine the role of the Court of Protection in cases relating to patients with impaired decision-making capacity who require a transplant, (2) to highlight the lack of empirical data on patients who have faced inequitable access to transplant and (3) highlight the shortcomings of the existing legal and regulatory framework in England and Wales guiding clinical decision making for patients in William’s position. We consequently argue that there is a clear need for action to ensure equitable access to transplant for those in William’s position. Furthermore, we suggest that there is a responsibility incumbent on policy makers and clinicians alike to develop a meaningful, and meaningfully operational, framework centred on preventing discrimination against potential organ recipients based on their decision-making capacity. (shrink)

Psychedelics are experiencing a renaissance in mental healthcare. In recent years, more and more early phase trials on psychedelic-assisted therapy have been conducted, with promising results overall. However, ethical analyses of this rediscovered form of treatment remain rare. The present paper contributes to the ethical inquiry of psychedelic-assisted therapy by analysing the ethical implications of its therapeutic mechanisms proposed by the relaxed beliefs under psychedelics (REBUS) hypothesis. In short, the REBUS hypothesis states that psychedelics make rigid beliefs revisable by increasing (...) the influence of bottom-up input. Put differently, patients become highly suggestible and sensitive to context during a psychedelic session, amplifying therapeutic influence and effects. Due to that, patients are more vulnerable in psychedelic-assisted therapy than in other therapeutic interventions; they lose control during a psychedelic session and become dependent on the therapeutic setting (including the therapist). This enhanced vulnerability is ethically relevant and has been exploited by some therapists in the past. Therefore, patients in current research settings and starting mainstream medical settings need to be well informed about psychedelics’ mechanisms and their implications to give valid informed consent to treatment. Furthermore, other security measures are warranted to protect patients from the vulnerability coming with psychedelic-assisted therapy. (shrink)

The results of tests carried out using next-generation genomic sequencing (NGS) possess a peculiar and perhaps unique ‘diagnostic durability’. Unlike most other forms of testing, if genomic results or data are stored over time, then it remains possible to interrogate that information indefinitely, without having to retest the patient. Another peculiar property of genomic results is that their interpretations are subject to change within relatively short time frames. For instance, a genomic variant that is of uncertain significance (VUS) at the (...) time of testing may shortly afterwards come to be understood as pathogenic (P) or benign (B). Moreover, variant classifications might be downgraded from likely pathogenic to VUS or B, or regraded from B to VUS. These two properties of genomic testing have important implications for the responsible implementation of genomic testing in healthcare. One of these is that they prompt the question whether diagnostic laboratories are morally required to routinely reinterpret their genomic variant classifications and reissue patient reports in the case of materially relevant changes. We take up this question in our paper, in which we argue against the existence of any general duty to reinterpret genomic variant classifications (as had been argued for by Appelbaum et al 1). Still, we maintain that a restricted duty to reinterpret ought to be recognised.2 We thank the authors of the commentaries on our paper for their attention to our argument and for their thoughtful responses to (and expansions of) our position. Oerlemans et al address …. (shrink)

Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis procedures is highly desirable, there is an equally widespread understanding that routine reanalysis of individual patient results is not presently feasible to perform for all patients. Instead, researchers, geneticists and ethicists are beginning to turn their attention to one part of reanalysis—reinterpretation of previously classified variants—as a means of (...) achieving similar ends to large-scale individual reanalysis but in a more sustainable manner. This has led some to ask whether the responsible implementation of genomics in healthcare requires that diagnostic laboratories routinely reinterpret their genomic variant classifications and reissue patient reports in the case of materially relevant changes. In this paper, we set out the nature and scope of any such obligation, and analyse some of the main ethical considerations pertaining to a putative duty to reinterpret. We discern and assess three potential outcomes of reinterpretation—upgrades, downgrades and regrades—in light of ongoing duties of care, systemic error risks and diagnostic equity. We argue against the existence of any general duty to reinterpret genomic variant classifications, yet we contend that a suitably restricted duty to reinterpret ought to be recognised, and that the responsible implementation of genomics into healthcare must take this into account. (shrink)

Central to Watts and Newson’s argument in their seminal paper ‘ Is there a duty to routinely reinterpret genomic variant classifications? ’ is that diagnostic laboratories are not morally obligated to actively reinterpret variants of uncertain significance (VUS) due to the superior outcomes offered by next-generation sequencing (NGS) compared with traditional methods.1 NGS technologies can identify, analyse and interpret millions of genetic variations at once. For example, ‘the use of conventional molecular assays in clinical contexts could require doing a lot (...) of assays for various mutations. Using these different assays, more tissue may be required. These targets can accurately be questioned using NGS technology in a single test.’2 If NGS-based genomic sequencing is reliable and its output outweighs the potential harm of uncertainties, then, it is plausible to say that those test providers cannot incur a moral duty to actively reinterpret VUS because there won’t be any need to do so.1 Despite its seeming reliability, diagnostic laboratories face enormous challenges in implementing NGS-based …. (shrink)

In cases where the best interests of the child are disputed or finely balanced, Clinical Ethics Committees (CECs) can provide a valuable source of advice to clinicians and trusts on the pertinent ethical dimensions. Recent judicial cases have criticised the lack of formalised guidance and inconsistency in the involvement of parents in CEC deliberations. In Manchester University NHS FT v Verden [2022], Arbuthnot J set out important procedural guidance as to how parental involvement in CEC deliberations might be managed. She (...) also confirmed substantive guidance on the role of parental views in determining the child’s best interests. We agree that it is good practice to ensure that the patient voice is heard in ethics processes, but how that is achieved is controversial. Surely it is best that what matters most to a patient and their family, whether facts or values, is conveyed directly to those considering the moral issues involved, rather than via a prism of another party. The approach suggested in theVerdencase has much in common with the process used by our CEC. In this article, we commend Arbuthnot J’s approach, provide an example of its effective operation and consider what it might mean for ethics processes. (shrink)

In his paper, ‘Patients, doctors and risk attitudes’, Makins argues that doctors, when choosing a treatment for their patient, need to follow their risk profile.1 He presents a pair of fictitious diseases facing a patient who either has ‘exemplitis’, which requires no treatment or ‘caseopathy’, which is severe and disabling and for which there is a treatment with unpleasant side effects. The doctor needs to decide whether the patient should pursue the unpleasant treatment, just in case he has caseopathy. Makins (...) believes that rational-choice theory is a productive way to approach this problem. This theory frames all decisions as gambles. Each possible gamble (eg, not to pursue treatment) leads, probabilistically, to a set of outcomes (life with no disease and no side effects, but also, possibly, life with a disabling disease, since no treatment is taken). Utilities of these outcomes and probabilities that they will happen are combined to yield a number—expected utility. One is supposed to gamble—to make a choice—in a way that maximises this expected utility. Makins takes this framework for granted and is focused on an additional complication, the patient’s risk preference. He believes that, in his hypothetical example, even if expected utility were exactly the same, withholding treatment …. (shrink)

Gene drive technologies (GDTs) have been proposed as a potential new way to alleviate the burden of malaria, yet have also raised ethical questions. A central ethical question regarding GDTs relates to whether it is morally permissible to intentionally modify or eradicate mosquitoes in this way and how the inherent worth of humans and non-human organisms should be factored into determining this. Existing analyses of this matter have thus far generally relied on anthropocentric and zoocentric perspectives and rejected an individualist (...) biocentric outlook in which all living organisms are taken to matter morally for their own sake. In this paper, we reconsider the implications of taking a biocentric approach and highlight nuances that may not be evident at first glance. First, we shortly discuss biocentric perspectives in general, and then outline Paul Taylor’s biocentric theory of respect for nature. Second, we explore how conflicting claims towards different organisms should be prioritised from this perspective and subsequently apply this to the context of malaria control using GDTs. Our ethical analysis shows that this context invokes the principle of self-defence, which could override the pro tanto concerns that a biocentrist would have against modifying malaria mosquitoes in this way if certain conditions are met. At the same time, the case study of GDTs underlines the relevance of previously posed questions and criticism regarding the internal consistency of Taylor’s egalitarian biocentrism. (shrink)

Makins1 formulates a deference principle which states that patients’ attitudes towards the health outcomes associated with different treatment options should drive decision-making and not physicians’ attitudes towards these health outcomes. Although this deference principle is widely agreed on, it is less obvious which role patients’ risk attitudes should play. Makins takes patients’ attitudes towards health outcomes to be sufficiently analogous to patients’ risk attitudes in order to extend his deference principle. His extended deference principle states that patients’ attitudes towards the (...) health outcomes and risks associated with different treatment options should drive decision-making and not physicians’ attitudes towards these health outcomes and risks. This extension is not only taken to be ethically preferable, but also practically realisable as one can reliably trace patients’ (risk) attitudes. Problematic situations arise when patients exhibit risk attitudes they do not reflexively endorse. For instance, patients might systematically make more risky choices than they think they should make. In response to these kinds of situations, Makins proposes to revise his deference …. (shrink)

Nicholas Makins proposes that doctors should take a deferential attitude towards their patients’ preferences when making decisions, and this includes their risk attitudes.1 He grounds this proposal in the principles of autonomy and beneficence. Makins appears to hold autonomy as a good in and of itself, and so for him it follows that deferring to patients must also be good. He also seems to hold that the satisfaction of personal preferences inevitably leads to improved well-being, and so deferring to patients’ (...) risk attitudes upholds the principle of beneficence. Unfortunately, Makins explicitly avoids defining well-being. His account seems to ignore the possibility of an objective measure of health that could contravene patient preferences, and therefore, challenge a deferential approach. While it is true that medicine is replete with complex decisions and significant uncertainty which require value judgements to navigate, it is not true medicine is purely about satisfying preferences. Patient preferences should always guide clinical decisions, but it seems to me Makins is making the far stronger claim that a doctor should act as a substitute decision-maker of sorts, doing their best to make the decision as if they were the patient themselves. I would contend this is not a good idea, as it would clearly impact a doctor’s …. (shrink)

Makins’s analysis of the philosophical justification of decision-making understates and so misinterprets the importance of patient values to ‘the deference principle.’ (Makins N,1, p1) He assesses autonomy and beneficence as two separate arguments in support of deferring to patient preferences, but they only work well considered together. Further, neither the constitutive nor the evidential view of beneficence fully recognises the importance of patient values to understanding the patient’s worldview, which in turn determines what risks and benefits matter most. Revising these (...) arguments enables a much fuller understanding of the importance of patient values to the practice of medicine, which will in turn improve the refinement of the deference principle. Autonomy requires beneficence, and vice versa, for either of them to be sufficient arguments for deferring to patient choices. Focusing on autonomy alone to justify deference overstates the value of choice in and of itself, as good medicine does not pursue just any choices. It seeks informed consent, which means that the choices we truly value are those made while understanding what is importantly relevant to the choice. A well-informed decision includes data about expected side effects and likelihood of beneficial effects; but it also includes knowing the patient’s values and goals. One must know what is actually valuable …. (shrink)

Nicholas Makins makes a valuable contribution to the literature on medical decision-making, highlighting the role that risk attitudes play in deliberation and subsequently arguing that, in medical choices under uncertainty, if considerations of autonomy and beneficence support deference to patient values and outcome preferences then they also support deference to patients’ attitudes to risk.1 Crucially, however, Makins suggests that it is not simply first-order risk attitudes that are the appropriate target of deference but, rather, patients’ higher-order risk attitudes. In other (...) words, Makins argues that if considerations of autonomy and beneficence support deference in medical decision-making, this deference should include the risk attitudes that individuals desire to have or reflectively endorse. This commentary draws out a morally relevant and overlooked distinction between: (1) deferring to patients’ higher-order attitudes that endorse the first-order risk attitudes they currently hold. and (2) deferring to patients’ higher-order attitudes that endorse risk attitudes that are at odds with the first-order risk attitudes they currently hold (which equates to a higher-order desire to change one’s first-order risk-attitudes). I agree with Makins that if respect for autonomy and beneficence support deference to patient preferences, then these considerations may also support deference to at least some higher-order risk attitudes, namely, those of type (1). But I think that whether they support deference to those of type (2) is less clear. In particular, it does not …. (shrink)

In his featured article, Makins suggests that healthcare professionals ought to defer to patients’ higher-order attitudes towards their risk attitudes when making medical decisions under uncertainty.1 He contends that this deferential approach is consistent with widely held antipaternalistic views about medicine. While Makins offers novel, insightful and provocative perspectives, we illustrate in this commentary that the theory suffers from some weaknesses and shortcomings that limit its persuasiveness and applicability and professionals should take a cautious approach when applying it to their (...) healthcare practice. While Makins does not provide a clear and consistent definition of higher-order risk attitudes, in mathematics, higher-order attitudes should be defined by the sign and shape of the derivatives of the utility or value function beyond the second order. Prudence is defined by a positive third derivative (convex marginal utility), while temperance is defined by a negative fourth derivative (concave second derivative).2 It is worth noting that higher-order attitudes are domain-specific, context-dependent and situation-sensitive. They vary depending on the framing, wording, format or presentation of the choice problem, …. (shrink)

A lively topic of debate in decision theory over recent years concerns our understanding of the different risk attitudes exhibited by decision makers. There is ample evidence that risk-averse and risk-seeking behaviours are widespread, and a growing consensus that such behaviour is rationally permissible. In the context of clinical medicine, this matter is complicated by the fact that healthcare professionals must often make choices for the benefit of their patients, but the norms of rational choice are conventionally grounded in a (...) decision maker’s own desires, beliefs and actions. The presence of both doctor and patient raises the question of whose risk attitude matters for the choice at hand and what to do when these diverge. Must doctors make risky choices when treating risk-seeking patients? Ought they to be risk averse in general when choosing on behalf of others? In this paper, I will argue that healthcare professionals ought to adopt a deferential approach, whereby it is the risk attitude of the patient that matters in medical decision making. I will show how familiar arguments for widely held anti-paternalistic views about medicine can be straightforwardly extended to include not only patients’ evaluations of possible health states, but also their attitudes to risk. However, I will also show that this deferential view needs further refinement: patients’ higher-order attitudes towards their risk attitudes must be considered in order to avoid some counterexamples and to accommodate different views about what sort of attitudes risk attitudes actually are. (shrink)

In my feature article in this issue, ‘Doctors, patients and risk attitudes’, I argue that considerations of both autonomy and beneficence support the practice of healthcare professionals deferring to their patients’ reflectively endorsed risk attitudes when making decisions under uncertainty.1 The commentaries written in response to this article present many interesting criticisms, limitations and applications of the view, and I am grateful to all of the commentators for their engagement with this topic. I cannot possibly do justice to all of (...) the points they have raised in this brief response, so I will address two common themes that appear in a number of the commentaries: first, whether the view I have proposed goes too far or not far enough in deferring to individual patients; and second, the epistemic challenge that would be faced when trying to put this approach into practice. Theoretical accounts of the link between preferences and either well-being or autonomy face a familiar tension: if well-being or autonomy are tied too closely to individuals’ actual preferences, one must contend with examples of preferences that seem obviously bad for a person or disconnected from their status as …. (shrink)

Mental health legislation that requires patients to accept ‘care’ has come under increasing scrutiny, prompted primarily by a human rights ethic. Epistemic issues in mental health have received some attention, however, less attention has been paid to the possible epistemic problems of mental health legislation existing. In this manuscript, we examine the epistemic problems that arise from the presence of such legislation, both for patients without a prior experience of being detained under such legislation and for those with this experience. (...) We also examine how the doctor is legally obligated to compound the epistemic problems by the knowledge they prioritise and the failure to generate new knowledge. Specifically, we describe the problems of testimonial epistemic injustice, epistemic silencing, and epistemic smothering, and address the possible justification provided by epistemic paternalism. We suggest that there is no reasonable epistemic justification for mental health legislation that creates an environment that fundamentally unbalances the doctor–patient relationship. Significant positive reasons to counterbalance this are needed to justify the continuation of such legislation. (shrink)

Sometimes researchers explicitly or implicitly conceive of authorship in terms of moral or ethical rights to authorship when they are dealing with authorship issues. Because treating authorship as a right can encourage unethical behaviours, such as honorary and ghost authorship, buying and selling authorship, and unfair treatment of researchers, we recommend that researchers not conceive of authorship in this way but view it as a description about contributions to research. However, we acknowledge that the arguments we have given for this (...) position are largely speculative and that more empirical research is needed to better ascertain the benefits and risks of treating authorship on scientific publications as a right. (shrink)

In his paper, ‘Patients, doctors and risk attitudes,’ Nicholas Makins1 argues that healthcare professionals should defer to a patient’s higher-order risk attitudes (ie, the risk attitudes they desire to have or endorse within themselves upon reflection) when making medical decisions. We argue against Makins’ deference to higher-order risk attitudes on the basis that (1) there are significant practical concerns regarding our ability to easily and consistently access and verify the higher-order risk attitudes of patients, (2) there is a lack of (...) a theoretical limit on higher-order risk attitudes (eg, second, third, fourth order), and (3) the consideration of higher-order risk attitudes is actually more paternalistic than Makins suggests because it narrows what counts as an autonomous preference to the limited occasions in which an individual actually reflects on his or her own risk attitude. On the issue of practicality, we can reasonably expect that healthcare professionals would find difficulty eliciting the higher-order risk attitudes of their patients. Take for example the patient who has never expressed his higher-order desire to be more risk adverse and who is not willing nor comfortable expressing this desire. What is the healthcare professional expected to do in this situation? This is even more of a concern for the incapacitated patient, to which Makins seems to imply that …. (shrink)

Makin argues that doctors1 should defer to each patient’s attitude to risk, over and above standard, utility-based and outcome-focussed medical decision-making models, in selecting treatment options for that patient.1 Although Makin articulates the problem as a dilemma of whether ‘to give the treatment or to withhold it’, it can be assumed that his question is whether the doctor should offer a certain treatment; because both the General Medical Council and law require doctors to engage patients in shared decision-making (SDM) and (...) to obtain consent before ‘giving’ any treatment. Yet, Makin is correct in asserting that doctors ‘make choices on behalf of their patients on a daily basis’ insofar that doctors do have to make certain a priori decisions. SDM requires a starting point—a range of clinically appropriate or reasonable options—on which patients and doctors can collaboratively deliberate in order to reach a treatment decision; and the doctor has to set out this starting point.2 Thus, Makin’s reductive claim is that doctors should take each patient’s risk attitude into account in setting out the starting points for SDM. In this commentary, I will explore UK case law in response to Makin’s proposal; because, ultimately, doctors have to work within the legal framework. Makin relies on the bioethical principles of respect …. (shrink)

The online space has become a digital public square, where individuals interact and share ideas on the most trivial to the most serious of matters, including discussions of controversial ethical issues in science, technology and medicine. In the last decade, new disciplines like computational social science and social data science have created methods to collect and analyse such data that have considerably expanded the scope of social science research. Empirical bioethics can benefit from the integration of such digital methods to (...) investigate novel digital phenomena and trace how bioethical issues take shape online.Here, using concrete examples, we demonstrate how novel methods based on digital approaches in the social sciences can be used effectively in the domain of bioethics. We show that a digital turn in bioethics research aligns with the established aims of empirical bioethics, integrating with normative analysis and expanding the scope of the discipline, thus offering ways to reinforce the capacity of bioethics to tackle the increasing complexity of present-day ethical issues in science and technology. We propose to call this domain of research in bioethicsdigital bioethics. (shrink)

Colgrove challenges Doug Hardman’s account of deception in medicine. Hardman contends physicians can unintentionally deceive their patients, illustrating this by way of an acupuncturist who believes what she says despite insufficient medical evidence, falling short of what Hardman believes adequate disclosure requires. Colgrove argues deception requires intent but constructs an alternative case in which an acupuncturist does not believe what he tells the patient, but purportedly lacks an intent to deceive. Here, I argue that both acupuncturists deceive, and both can (...) be said to do so intentionally. Neither lies, but rather they seem to engage another deceptive form of speech, what Frankfurt calls bullshit. Building on Colgrove’s case, I argue cases where a physician’s disclosure includes reading a script they do not believe, this is both deceptive and contrary to professional medical ethics. (shrink)

Bobier and Omelianchuk argue that the Birth Strategy for addressing analogies between abortion and infanticide is saddled with a dilemma. It must be accepted that non-therapeutic late-term abortions are either, impermissible, or they are not. If accepted, then the Birth Strategy is undermined. If not, then the highly unintuitive claim that non-therapeutic late-term abortions are permissible must be accepted. I argue that the moral principle employed to defend the claim that non-therapeutic late-term abortions are morally impermissible fails to do so. (...) Furthermore, the principle that people have a right to bodily autonomy can be used as an argument for the conclusion that non-therapeutic late-term abortions are permissible and is intuitively stronger than the intuition for the opposite of this conclusion. This is because people having a right to bodily autonomy explains the impermissibility of rape and sexual assault. Consequently, the posited dilemma is defused and does not undermine the Birth Strategy. (shrink)

In ‘Patients, doctors and risk attitudes,’ Makins argues that, when physicians must decide for, or act on behalf of, their patients they should defer to patient risk attitudes for many of the same reasons they defer to patient values, although with a caveat: physicians should defer to the higher-order desires of patients when considering their risk attitudes. This modification of what Makins terms the ‘deference principle’ is primarily driven by potential counterexamples in which a patient has a first-order desire with (...) one risk attitude (either risk-seeking or averse) and a second-order desire that this risk attitude not be effective in guiding their choices.1 There are two reasons we might think people with obsessive–compulsive disorder (OCD) are particularly relevant patients for evaluating Makins’ proposal. Not only might their first-order risk attitudes be irrational, but many people with OCD also judge their own OCD behaviours to be excessive or unwarranted making them structurally similar to the counterexamples outlined above. Yet, I argue that recent research about risk and decision-making under uncertainty for those with OCD complicates Makins’ proposal by raising questions of whether and to what degree their risk attitudes are irrational such that they should not play a part in the surrogate decisions made by physicians. This places more …. (shrink)

Nicholas Makins argues persuasively that medical decisions should be made with consideration for patients’ higher order risk attitudes.1 I will argue that an understanding of risk attitudes in medical decision-making is incomplete without critical engagement with emotions and affects (feelings associated with something good or bad). The primary aim of this commentary is to emphasise that clinical decisions are often emotionally charged, and it is crucial to engage closely with emotions and affects that shape these decisions, particularly when navigating complex (...) and uncertain situations. In the face of uncertainty, emotions such as fear, sadness or anxiety play a significant role in risk attitudes and medical decisions. I contend that recognising risk as a feeling is crucial to respecting patients’ values, preferences and decisions in light of the substantial body of research on risk perception and attitudes that suggests individuals make decisions based not only on what they think, but also on how they feel. In recent years, scholars have begun to acknowledge the value of emotions in understanding medical decisions and healthcare decision-making processes,2 especially under uncertainty. Furthermore, some philosophers and social scientists in field of risk research acknowledge emotions as both affective and cognitive in nature, and influence risk perceptions and attitudes.3 Risk …. (shrink)

The widely accepted understanding in contemporary discourse is that race and ethnicity fundamentally arose as social constructs devoid of inherent biological or scientific significance.1 Despite this consensus, discussions abound, including in this journal,2 regarding the extent and manner in which racial and ethnic categorisations should influence the landscape of medical research, practice and policy. In an ideal paradigm, medicine should exude an unwavering commitment to impartiality, extending care and treatment to every individual, unfettered by considerations of their racial or ethnic (...) background—an approach that can be described as ‘colour blind.’ Yet, a cursory examination of medicine’s historical trajectory and the enduring realities of human prejudices unravels a precarious tension. This tension resides at the intersection of two seemingly conflicting imperatives: one, the ethical mandate for medicine to operate as a colour-blind entity, and the other, the ethical duty to candidly acknowledge, confront and rectify the historical and contemporary shortcomings woven into the fabric of our healthcare systems. Navigating this precarious balance demands a nuanced and introspective approach, one that aspires to forge a path towards a more equitable healthcare landscape while remaining steadfastly committed to the principles of honesty, accountability and the pursuit of a just and inclusive future. Scientific journals are confronted with the intricate dilemma of addressing racist scientific records.3 The question at hand pertains to whether content …. (shrink)

In ‘Patients, doctors and risk attitudes,’ Makins argues for ‘straightforwardly’ (Makins1 p1) extending antipaternalistic views about medical decision-making to include deferential considerations of risk attitudes that a patient might endorse. Reflecting on Makins’ important contribution to higher order attitudes in decision theory, we seek to clarify the practical applicability of his argument to specific clinical settings, namely in mental health. We argue that considering low and higher order risk preferences are not only practically difficult, but also potentially ethically fraught and (...) especially so in the provision of mental healthcare. Deferring to risk attitudes potentially mutes a more robust curiosity of patients’ preferences and desires that can promote both autonomy and beneficence but are explicitly relationally grounded. We argue that a relational understanding of autonomy is a much more robust way of thinking about the value of risk attitudes among other patient preferences, attitudes and goals. Makins rightly expounds on the challenges faced by healthcare professionals who are often required to make determinative recommendations for their patients. Providers must explain uncertain benefits in relation to uncertain risks, therefore, exploring the risk attitudes of patients, appears, prima facie, a rational, patient-centred and autonomy-promoting choice. It invariably invites discussion of Perske’s 1972 dignity of …. (shrink)

Authoritarian governments are characterised by political systems with concentrated and centralised power. Healthcare is a critical component of any state. Given the powers of an authoritarian regime, we consider the opportunities they possess to derive good health outcomes. The 2019 Varsity Medical Ethics Debate convened on the motion: ‘This house believes authoritarian government is the route to good health outcomes’ with Oxford as the Proposition and Cambridge as the Opposition. This article summarises and extends key arguments made during the 11th (...) annual debate between medical students from the Universities of Oxford and Cambridge. By contrasting the principles underlying authoritarianism and democracy, it enables a discussion into how they translate into healthcare provision and the outcomes derived. Based on the foundation of said principles, an exploration of select cases represents examples of applications and the results. We analyse the past, present and future implications on the basis of fundamental patient-centred care. (shrink)

McCullough and colleagues draw an historical line from the writings of Percival, who found himself resolving arguments (sometimes violent) between physicians, surgeons and apothecaries, to the concept of civility as a professional virtue and duty. The authors show that civility is a prerequisite to effective cooperation, which itself underpins patient safety and positive clinical outcomes—desirable endpoints of any discussion about healthcare. They exhort academic leaders to teach, role model and reward correct behaviours.1 Why then, as a clinician manager with a (...) deep interest in fostering civility and psychological safety, am I not satisfied? Three reasons: the paper does not adequately explore the reasons why, its focus is largely restricted to academic institutions, and it does not encompass the non-clinical workforce; as a result, its proposed solutions appear ungrounded. Why are ‘good people’, who were attracted to careers that demand altruism and empathy, uncivil in the workplace? What are the competing goals that result in curt, disrespectful or downright rude exchanges? This has been studied. Leape et al concluded that endogenous factors such as personality, insecurity, anxiety, depression, narcissism and responses to prior …. (shrink)

A growing body of cross-cultural survey research shows high percentages of clinicians report using placebos in clinical settings. One motivation for clinicians using placebos is to help patients by capitalising on the placebo effect’s reported health benefits. This is not surprising, given that placebo studies are burgeoning, with increasing calls by researchers to ethically harness placebo effects among patients. These calls propose placebos/placebo effects offer clinically significant benefits to patients. In this paper, we argue many findings in this highly cited (...) and ‘hot’ field have not been independently replicated. Evaluating the ethicality of placebo use in clinical practice involves first understanding whether placebos are efficacious clinically. Therefore, it is crucial to consider placebo research in the context of the replication crisis and what can be learnt to advance evidence-based knowledge of placebos/placebo effects and their clinical relevance (or lack thereof). In doing so, our goal in this paper is to motivate both increased awareness of replication issues and to help pave the way for advances in scientific research in the field of placebo studies to better inform ethical evidence-based practice. We argue that, only by developing a rigorous evidence base can we better understand how, if at all, placebos/placebo effects can be harnessed ethically in clinical settings. (shrink)

Several months ago, an Israeli resident in emergency medicine engaged in a hunger strike to protest 26-hour shifts. His protest was part of a country-wide struggle of medical residents from all disciplines against such long shifts, arguing that they are a thing of the past, and that they harm patient care. While there is actually no evidence that long shifts harm patient outcomes, they very likely reduce civility among staff members and towards patients.1 Two kinds of strategies are possible to (...) address this likely source of incivility: expect and train residents to be kinder and more patient towards their peers and patients, or do away with long shifts. Therein lies the tension in implementing the case for civility made by McCollough et al 2 should we invest in agent-based or system-based interventions? Virtue ethics is prominent in discussions of the professional duties of healthcare providers (HCPs). A common theme that threads throughout these discussions is that HCPs ought to, or are expected to behave in a kind, patient and sensitive manner towards their peers and patients, …. (shrink)

Global governance of emerging, disruptive biomedical technologies presents a multitude of ethical problems. The recent paper by Shoziet alraises some of these problems in the context of a discussion of what could be themostdisruptive (and most morally fraught) emerging biomedical technology—human germline genome editing. At the heart of their argument is the claim that, for something like gene editing, there is likely to be tension between the interests of specific states in crafting regulation for the technology, and disagreement about what (...) would be necessary to meet the requirements for responsible translation of gene editing into the clinic. This complicates hopes for a tidy, algorithmic process of crafting global governance via frameworks for regulation built around core ‘ethical values and principles’ (as they are called in the WHO Framework), and also forces us to confront deeper philosophical questions about biotechnology and global health. (shrink)

McCullough et al ’s article about the professional virtue of civility makes a persuasive case that civility should be a core value in medical education, and that civility facilitates the development of organisational cultures committed to excellence in clinical and scientific reasoning.1 In particular, the negative implications of incivility on the well-being of individuals, on team-working dynamics and on patient safety, creates a strong argument that incivility from healthcare professionals is entirely unacceptable. However, in terms of professional attitudes, civility is (...) the bare minimum that modern clinicians require. Modern healthcare involves complex systems in which patients are likely to encounter multiple different healthcare professionals in the course of their investigation and treatment.2 No one clinician has all of the skills or knowledge that patients need and so the practice of medicine is necessarily collaborative. However, civility can be achieved by individuals who are content to politely and respectfully coexist in …. (shrink)

Civility is a nice idea. While we find common ground with the aspirations of a civility-based professional culture in healthcare and acknowledge the potential impacts of incivility on staff and patients, we should be careful in dismissing it entirely, as McCullough et al 1 do. As we will argue below, appeals to civility, when understood alongside power, could serve to stifle and mask legitimate dissent, limiting genuine criticism and progress. Crucially, we contend that incivility itself may serve instrumental and communicative (...) purposes that draw attention to injustice or inequity. Our aim is not to defend every act of incivility but to caution calls for its prevention. By focusing on intentional acts of incivility and by emphasising the political, we hope to show that ‘being polite is not the same as being a good citizen’2 and the absence of tension is not the same as the presence of justice (King, 1963).3 We go on to discuss the implications of this approach to addressing ‘uncivil’ behaviour, arguing that incivility is a by-product of institutions that dismiss genuine grievances and maintain inequitable conditions. When we …. (shrink)

The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records. Recently, there has been a shift in attention towards a paradigm of data sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 (...) and Genomics England.3 A recent review commissioned by the UK’s Department of Health and Social Care (hereafter referred to as the ‘Goldacre Review’) places TREs at the heart of its recommendations around the future of National Health Service (NHS) health data sharing for research, describing them as the ‘clear path forward’ to a health data system in which trust is ‘earned’ through ‘provable, credible steps to protect patient privacy, and by being transparent with everyone about everything that is done with their deepest medical secrets’.4 We argue that rather than building public trust, the TRE model actually reduces the need for trust in the use and sharing of patient health data. This is because trust is importantly connected to vulnerability and uncertainty; an essential part of trusting someone is accepting that one’s trust could be disappointed or betrayed. In attempting to provide assurances or guarantees of data privacy and security, TREs strive to remove this vulnerability, and so remove the need for trust. We do not see this as a problem and are broadly supportive of this kind of data sharing model because of the increased security and oversight it provides. However, having argued that TREs are not actually concerned with trust, we consider the importance of being precise about the words that we use …. (shrink)

McCullough et al 1 confront a challenge that no organisation has fully eradicated: incivility. They emphasise that civility is not merely a matter of common decency and good conduct but also a moral imperative, an aspirational value that should be promoted and modelled by all the members of the institutions and throughout all the stages of practitioners’ careers. In their fusion of ancient wisdom and philosophical classics with their own insights on contemporary workplaces, they forward a defensible case for why (...) civility matters and is worthy of continuous contemplation. Given the clarity and persuasion of their piece, I do not seek to challenge their claims. Instead, I will complement their argument with a perspective highlighting the difficulties of identifying low-level workplace mistreatments and responding to them impartially. While organisations should certainly not skimp on their efforts to promote civility and hold their transgressors accountable, there are nonetheless boundaries to good intentions.2 The unexamined pursuit of civility, if characterised by inconsistent definitions of harm and inappropriate allegations of uncivil acts, runs the risk of fostering its own toxicity spirals. With the hope of contributing to the exchange initiated by McCullough and colleagues, I briefly highlight …. (shrink)

In his feature article,1 McCullough LB et al highlights the importance of civility among medical educators and academic leaders in shaping the professional habits of junior doctors. He emphasises the role of medical educators in correcting unprofessional behaviour and emphasises the need for academic leaders to motivate junior doctors to develop virtuous professional habits. The relationship between junior doctors and medical educators can be likened to that between students and teachers. Through active or passive learning from medical educators, junior doctors (...) gain the necessary knowledge, experience and professional virtues. Academic leaders, as prominent experts in their field, play a guiding role in this process. Therefore, their relationship with junior doctors is akin to that between idols and fans. In this regard, academic leaders can serve as exceptional role models for guiding junior doctors to develop the inclination to …. (shrink)

A prominent view on personal identity over time, Jeff McMahan’s ‘Embodied Mind Account’ (2002) holds that we cease to exist only once our brains can no longer sustain the basic capacity to uphold consciousness. One of the many implications of this view on identity persistence is that we continue to exist throughout even the most severe cases of dementia, until our consciousness irreversibly shuts down. In this paper, I argue that, while the most convincing of prominent accounts of personal identity (...) over time, McMahan’s account faces serious challenges in explanatory power of dementias and related neurodegenerative conditions. Particularly, this becomes visible in the face of emerging methods for neural tissue regeneration, and the possibility of ‘re-emerging patients’. I argue that medical professionals’ neglecting qualitative aspects of identity risks resulting in grave misunderstandings in decision-making processes, and ethically objectionable outcomes in future practices. Finally, I propose revisions which could potentially salvage the great benefits that Embodied Mind Theory still can bring to the field of dementia care in terms of understanding life, death, and identity across the lifespan. (shrink)

Incivility among physicians, between physicians and learners, and between physicians and nurses or other healthcare professionals has become commonplace. If allowed to continue unchecked by academic leaders and medical educators, incivility can cause personal psychological injury and seriously damage organisational culture. As such, incivility is a potent threat to professionalism. This paper uniquely draws on the history of professional ethics in medicine to provide a historically based, philosophical account of the professional virtue of civility. We use a two-step method of (...) ethical reasoning, namely ethical analysis informed by pertinent prior work, followed by identifying the implications of clearly articulated ethical concepts, to meet these goals. The professional virtue of civility and the related concept of professional etiquette was first described by the English physician-ethicist Thomas Percival (1740–1804). Based on a historically informed philosophical account, we propose that the professional virtue of civility has cognitive, affective, behavioural and social components based on a commitment to excellence in scientific and clinical reasoning. Its practice prevents a dysfunctional organisational culture of incivility and sustains a civility-based organisational culture of professionalism. Medical educators and academic leaders are in a pivotal and powerful position to role model, promote and inculcate the professional virtue of civility as essential to an organisational culture of professionalism. Academic leaders should hold medical educators accountable for discharge of this indispensable professional responsibility. (shrink)

In our ‘The Professional Virtue of Civility and the Responsibilities of Medical Educators and Academic Leaders’,1 we provided an historically based conceptual account of the professional virtue of civility and the role of leaders of academic health centres in creating and sustaining an organisational culture of professionalism that promotes civility among healthcare professionals and between medical educators and learners. We emphasised that any adequate understanding of the virtues, including professional virtues, has cognitive, affective, behavioural and social components. Some of the (...) commentators expand on these components in important ways. Xuhao et al emphasises the importance of role models, especially in the hierarchical context of medical education.2 The hierarchy of faculty in the senior position and junior doctors and other learners below them has characterised medical education for centuries. Xuhao et al rightly call for academic leaders to shape this hierarchy in a morally responsible way, by becoming ‘exemplary role models’.2 Berry, a clinician manager, in critiquing our account, calls for an increased appreciation for the psychological and environmental factors that might explain why uncivil behaviour occurs.3 …. (shrink)

Incivility poses a serious threat to any healthcare system striving for effectiveness without sacrificing the requirements of humanity. Threats to civility within healthcare not only come from individual ‘bad apples’ exhibiting borderline and inacceptable behaviour, as seen in many ‘high-tech, high-risk, high-responsibility’ environments such as operating or emergency rooms.1 They may also be facilitated by ‘bad trees’ or system-immanent, poor healthcare environments.2 This may be the case when healthcare administrations, facing the challenges of political austerity, set budgetary targets that cannot (...) be met without seriously compromising quality of care, patient safety, and the well-being of those professionals working at the ‘sharp end’. Both individual and systemic factors fuel the occurrence of incivility,3 and individuals—rather than institutions—are often held responsible for acts of incivility. Nevertheless, explaining what might trigger incivility can never serve as a justification for it, because ‘in-civility’ —in its literal sense—breaches basic rules of civic cooperation and goodwill, and thus grossly violates the social …. (shrink)

The Nuffield Council on Bioethics (NCOB) is delighted to pick up the mantel of the Ethics briefings. For readers less familiar with the NCOB’s work, we are a leading independent policy and research centre, and the foremost bioethics body in the UK. We identify, analyse and advise on ethical issues in biomedicine and health so that decisions in these areas benefit people and society.1 Established in 1991, the NCOB has tackled a wide range of bioethics and medical ethics issues over (...) its thirty-two years, including issues relating to the beginning and end of life, health and society, data and technology, and research ethics. Early reports in the 1990s included, for example, ‘Genetics screening: the ethical issues’ and ‘Animal-to-human transplants: the ethics of Xenotransplantation’. More recent projects include setting out an ethical framework in the report ‘The future of ageing: ethical considerations for research and innovation’2 and a current joint project with the Ada Lovelace Institute3 considering the potential ethical implications of the convergence of AI and genomics technologies.4 In recent years, NCOB has increasingly focused on horizon scanning. What current and future national and international developments are likely to raise ethical issues in the short, medium and long-term? Insights for 2023 will soon be available at www.nuffieldbioethics.org/what-we-do/horizon-scanning, with new developments likely to be included alongside ongoing areas of medical and scientific research that we are tracking progress in, for example, in vitro derived gametes, surrogacy, biosafety and novel neurotechnologies. Disagreements between parents and healthcare teams about …. (shrink)

Smith argues that death caused by transplant surgery will not harm permanently unconscious patients, because they will not suffer a setback to their interests in the context of donation. Therefore, so the argument goes, the dead donor rule can be abandoned, because requiring a death declaration before procurement does not protect any relevant interest from being thwarted. Smith contends that a virtue of his argument is that it avoids the controversies over defining and determining death. I argue that it does (...) not and explain why no change in policy is justified. (shrink)

Calum Miller recently argued that a commitment to a very modest form of egalitarianism—equality between non-disabled human adults—implies fetal personhood. Miller claims that the most plausible basis for human equality is in being human—an attribute which fetuses have—therefore, abortion is likely to be morally wrong. In this paper, I offer a plausible defence for the view that equality between non-disabled human adults does not imply fetal personhood. I also offer a challenge for Miller’s view.

McCullough et al have taken up an important issue that is highly interesting from a theoretical as well as from a practical standpoint in drawing attention to (in)civility as a matter of professional ethics: As a ‘low intensity deviant behaviour’1 p3 incivility seems to widely escape the scope of professional norms as well as legal regulation and jurisdiction. At the same time, empirical evidence suggests that incivility occurs frequently in healthcare and might have an enormous negative impact on the quality (...) of patient care. Against this background medical ethics should no longer hesitate conducting profound conceptual and empirical research on (in)civility as an ethical issue. The authors’ analysis sheds light on the different dimensions of practical rationality as involved clinical reasoning and behaviour. Whereas I agree with their idea of civility being a ‘professional virtue with cognitive, behavioural and social components’1 p2 I cannot fully support their claim of the cognitive component lasting on a ‘commitment to excellence in scientific and clinical reasoning’ (ibid.). Instead I would like to argue that professionalism comprises both, civility as …. (shrink)

Among the most harrowing visuals of Britain’s ongoing ‘cost of living crisis’ are the security tags that began to appear on cheese, butter, chicken, sweets and infant formula milk in 2022. A week’s worth of formula milk—the sole or main food of the vast majority of infants for the first 6 months of life—now costs between £9.39 and £15.95.1 Low-income households are entitled to a ‘Healthy Start’ welfare payment, intended to avert malnutrition among the poorest children, but the weekly allowance (...) is just £8.50.2 There are reports of parents watering down formula, skipping or limiting feeds and initiating early weaning, all of which jeopardise the health of infants, with potentially lifelong consequences.3 No determinant of health is more critical than food. A 2019 study found that diet is the most significant risk factor for non-communicable disease, and that one in five deaths globally could be prevented by improving nutrition.4 Globally, 1 in 10 people cannot meet their daily energy needs,1 and the proportion of undernourished people is rising.5 In more than 50 countries, most of them in Africa, over a quarter of children are stunted or wasted due to undernourishment, with long-term effects on their cognitive and physical development. These are not problems of absolute scarcity; enough food is produced globally to feed ten billion people.6 In the UK, there is, at any given moment, sufficient food on supermarket shelves to meet the calorie and nutrient needs of the population. Yet the equivalent of nearly 200 million meals a year are discarded,7 while almost a quarter …. (shrink)

The Bhagavad Gita is one of the most ancient, venerated and popular religious texts originating from India.1 It provides an excellent insight into the tenets of Hinduism. The Bhagavad Gita was originally a part of the Mahabharata,2 and was essentially a dialogue about ethical dilemmas and moral philosophies between a teacher (Krishna) and a disciple (Arjuna). It is considered one of the foundational and most important books in Hinduism. The text provides a synthesis of spiritualism and dharmic ideas, and this (...) text has found widespread acceptance across India, and in regions where there is a strong presence of an Indian diaspora or individuals who have embraced Hinduism. There are several words and sentences in the Bhagavad Gita that are of pertinence to ethics in general, but I believe that there is one in particular, that has a great degree of fit with medical ethics. I refer to the word amanitvam. This word amanitvam refers to humility, and it refers to a concept that Krishna advised Arjuna to embody. I strongly believe that this particular word is deeply applicable in a medical ethics context, and indeed, may help physicians become more …. (shrink)

The Dead Donor Rule is intended to protect the public and patients, but it remains contentious. Here, I argue that we can abandon the Dead Donor Rule. Using Joel Feinberg’s account of harm, I argue that, in most cases, particularly when patients consent to being organ donors, death does not harm permanently unconscious (PUC) patients. In these cases, then, causing the death of PUC patients is not morally wrong. This undermines the strongest argument for the Dead Donor Rule—that doctors ought (...) not kill their patients. Thus, there is nothing wrong with abandoning the Dead Donor Rule with regard to PUC patients. Importantly, the harm-based argument defended here allows us to sidestep the thorny debate surrounding definitions of death. What matters is not when a patient dies but whether their death constitutes some further harm. (shrink)

Residents with dementia in long-term care facilities (LTCFs) often receive antipsychotic (AP) medications without clear clinical indications. One non-clinical factor influencing the use of APs in LTCFs is low staff levels. Often, using APs is viewed and rationalised by healthcare professionals in LTCFs as a lesser evil option to manage low staff levels. This paper investigates the ethical plausibility of using APs as a lesser of two evils in resource-constrained LTCFs. I examine the practice vis-à-vis the three frequently invoked conditions (...) of lesser evil justifications as specified in the wider philosophical literature. These conditions include (1) the necessity condition, (2) the condition of sensitivity to both deontic (ie, constraint-based) and non-deontic (ie, outcome-based) considerations and (3) the commensurability condition. I argue that there are considerable difficulties in demonstrating that the practice in question satisfies the conditions of lesser evil justifications. In particular, there are major difficulties in satisfying the condition of sensitivity to deontic and outcome-based considerations, and the commensurability condition. I also argue that the current philosophical debate on lesser-evil justifications is not straightforwardly applicable to the practice of using APs for non-clinical purposes in LTCFs. I contend that caregivers are not so-called ‘generic’ agents, and the assumed rarity of lesser evil cases is questionable. I conclude that until further work is done to resolve these issues, the lesser evil reasoning cannot be, at least routinely, used to formulate robust moral justifications for the practice in question. (shrink)

In their highly topical paper, Grahamet alargued that Trusted Research Environments (TREs) are not actually about trust because they reduce or remove ‘…the need for trust in the use and sharing of patient health data’. We believe this is fundamentally mistaken. TREs mitigate or remove some risks, but they do not address all public concerns. In this regard, TREs provide evidence for people to decide whether the bodies holding and using their data can be trusted. TREs may make it easier (...) for people to trust but there is still a need for that trust. (shrink)

van der Pijl et al 1 argue that if ‘stakes are high’ and there is ‘clear conviction by the care provider’ that it is ‘necessary’, episiotomy may be given after ‘opt-out consent’. Here I caution against the applicability of their approach to vaginal examination (VE): another routine intervention in birth to which they suggest their discussion may apply. I highlight three concerns: first, the subjective and unjustified nature of assessments of ‘necessity’; second, the inadequacy of current consent practices in relation (...) to VE; and third, the significant risk of perpetuating under-recognised harms associated with unwanted or unconsented VE. I argue that opt-out consent cannot be ethically justified for VE. Its use would result in further weakening of consent practices, circumvention of individuals’ autonomy, and greater harm for women and birthing people. At the outset, it is important to recognise that the authors do not claim that their approach should be applied to VE, merely that their discussion may have relevance to consent for other interventions beyond episiotomy ‘where consent is also frequently lacking, and which are under-researched’, including VE.1 Nonetheless, it is easy to assume that episiotomy and VE are sufficiently similar that their analysis might be transferred wholesale. I disagree. There are similarities: both interventions are performed on ‘the most intimate and socially sensitive body parts’1; …. (shrink)

The public health benefits of herd immunity are often used as the justification for coercive vaccine policies. Yet, ‘herd immunity’ as a term has multiple referents, which can result in ambiguity, including regarding its role in ethical arguments. The term ‘herd immunity’ can refer to (1) the herd immunity threshold, at which models predict the decline of an epidemic; (2) the percentage of a population with immunity, whether it exceeds a given threshold or not; and/or (3) the indirect benefit afforded (...) by collective immunity to those who are less immune. Moreover, the accumulation of immune individuals in a population can lead to two different outcomes: elimination (for measles, smallpox, etc) or endemic equilibrium (for COVID-19, influenza, etc). We argue that the strength of a moral obligation for individuals to contribute to herd immunity through vaccination, and by extension the acceptability of coercion, will depend on how ‘herd immunity’ is interpreted as well as facts about a given disease or vaccine. Among other things, not all uses of ‘herd immunity’ are equally valid for all pathogens. The optimal conditions for herd immunity threshold effects, as illustrated by measles, notably do not apply to the many pathogens for which reinfections are ubiquitous (due to waning immunity and/or antigenic variation). For such pathogens, including SARS-CoV-2, mass vaccination can only be expected to delay rather than prevent new infections, in which case the obligation to contribute to herd immunity is much weaker, and coercive policies less justifiable. (shrink)

This issue considers the ethics of a healthcare provider intervening into a patient’s genitalia, whether by means of cutting or surgery or by ‘mere’ touching/examination. Authors argue that the permissibility of such actions in the absence of a relevant medical emergency does not primarily turn on third-party judgments of expected levels of physical harm versus benefit, or on related notions such as extensiveness or invasiveness; rather, it turns on the patient’s own consent. To bolster this argument, attention is drawn to (...) the status of the genitals as ‘intimate’ anatomy—a status that is not fully erased by being in a medical context. In this editorial, we draw on the work of Talia Mae Bettcher on ‘intimate agency’ to explore why unconsented interventions into the genitalia may constitute a distinctive sort of personal violation compared to unconsented contact with various other parts of the human body. In their feature article, Marit van der Pijl and colleagues1 argue it is unethical for healthcare providers to perform unconsented episiotomies on persons in labour. In particular, they suggest that, outside of certain rare emergencies in which, for example, the person giving birth is incapacitated1 and the procedure cannot be delayed until consent becomes possible without introducing a significant risk of serious harm (call these ‘medically necessary’2 procedures), ‘presumed consent’ is the incorrect standard to apply. Instead, they stress that, especially when a proposed intervention involves a person’s genital, sexual or reproductive organs, the need to obtain their explicit consent in advance of proceeding must be honoured. As the authors note, the broader social significance of our genitalia—widely regarded as ‘private’ anatomy—is not erased by being in a medical context (see also 2–4). Boundaries must still be observed. Ethically, this ‘leaves a very small margin for error because invasion of these body parts …. (shrink)

Health worker shortages in many countries are reaching crisis levels, exacerbated by factors associated with the COVID-19 pandemic. In New Zealand, the medical specialists union has called for a health workforce emergency to be declared, yet at the same time, many foreign-trained healthcare workers are unable to stay in the country or unable to work. While their health systems differ, countries such as New Zealand, the USA and the UK at least partially rely on international medical graduates (IMGs) to ensure (...) access to health services, particularly in underserved communities. This paper focuses on the challenges faced by many IMGs, particularly those that constrain their capacity to live and work in the countries that rely on their skills. These challenges give rise to two ethical problems. First, they represent a failure of reciprocity towards IMGs; second, they represent a source of harm, both to IMGs themselves and to communities whose healthcare service depends on contributions made by IMGs. We argue that brain waste and disvaluing the contributions of IMGs and other foreign-trained health professionals have significant costs for maintaining a functional healthcare system, costs which must be adequately recognised and counted. (shrink)

In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...) misunderstanding of our position expressed in these replies, and sketch out where further research is needed. One of the central arguments of our original paper was that the language we use to describe data-sharing initiatives matters, because the way things like TREs are presented and framed makes a difference to what people can, and should, expect from them. However, there is a more basic and obvious problem with referring to these institutions as ‘trusted’: it begs the question about whether these institutions are, in fact, trusted. We cannot know in advance of these initiatives being implemented, established, and appropriate assessments completed, whether they are actually trusted. Further questions abound: whom might TREs eventually be trusted by? If some people end up trusting them, but not others, is it appropriate to call them ‘trusted’? At best, this is simply a case of wishful thinking (and a more accurate name would be ‘hopefully-TREs’). More problematically, this may be an instance of ‘trustworthiness-signalling’: an attempt to convince others to trust, without meeting the requirements for genuine trustworthiness. By calling TREs ‘trusted’, the implication seems to be that placing our trust in them is perfectly fine: they are the kinds of things that are trusted by others and can safely be trusted by us. But not only does simply calling something ‘trusted’ …. (shrink)

We read commentaries on our feature article ‘The ethics of consent during labour and birth: episiotomies’1 with gratitude and interest. Nearly all commenting authors agree that consent for in-labour procedures is necessary and ideally given at the point of intervening. Both Shalowitz & Ralston and Stirrat note that this is already required by professional statements and guidelines in the USA2 and UK3, respectively, but also note that practice does not yet conform. The Americans authors helpfully emphasise the importance of multilevel (...) institutional measures for closing this gap, including consent policies and reporting mechanisms, as well as ongoing education.2 The UK writer seconds the role for education within wider shared decision-making and informed choice approaches, and generously commends our paper for close study by all maternity care providers. Others add a cautionary note. Lee applauds all our recommendations, but notes our proposals cannot fully secure autonomy because of, among others, epistemic injustice and other power differentials.4 Kumar-Hazard and Dahlen worry that opt-out consent is equal to substitute decision-making; weakens women’s rights; and is open to abuse.5 Nelson and Clough object to our willlingness to work within a flawed conceptual framework, which ought to be challenged.6 We agree that there are limits to what our proposal can do. It cannot rectify unequal distributions of epistemic credibilities, either in general or in any particular interaction. Risk communication is never neutral;7 “even the most well-meaning healthcare professionals …. (shrink)

We commend the authors for their comprehensive discussion on consent and episiotomies.1 They correctly observe that informed consent for all proposed interventions in maternity care is always necessary. The claim that consent for maternity health services does not always have to be fully informed or explicit, however, is erroneous. We are especially concerned with, and surprised by, the endorsement of ‘opt-out consent’. ‘Opt-out consent’ (a.k.a. substitute decision making) is already standard practice in maternity healthcare, with obstetric violence a normalised response (...) to conclusive refusals or requests for explanations. Informed consent is based on the fundamental human rights to bodily autonomy and integrity, which healthcare providers are obliged to respect. Healthcare structured around human rights violations is not care. It is cruel and inhumane treatment—a violation of yet another fundamental human right—and a reflection of poor-quality care. To be valid, consent must always be informed, specific, timely, freely given and reversible. The provider must provide information specific to each and every proposed intervention in a timely manner. The consumer has the right to consider, freely accept or refuse before providers can act. They can also change their mind at any time. Provider attempts to substitute consumer decision-making rights constitute assault and battery. Whether the infraction was major or minor is of no consequence to human rights law. National courts create artificial …. (shrink)

PurposeAdolescents develop their decision-making ability as they transition from childhood to adulthood. Participation in their medical care should be encouraged through obtaining assent, as recommended by the American Academy of Pediatrics (AAP). In this research, we aim to define the current knowledge of AAP recommendations and surgeon practices regarding assent for elective reconstructive procedures.MethodsAn anonymous electronic survey was distributed to North American paediatric surgeons and fellows through the American Pediatric Surgical Association (n=1353).ResultsIn total, 220 surgeons and trainees responded (16.3%). Fifty (...) per cent of the surgeons who are familiar with the concept of assent had received formal training; 12% of the respondents had not heard of assent before the survey. Forty-seven per cent were aware of the 2016 AAP policy statement regarding assent in paediatric patients. Eighty-nine per cent always include adolescents as part of the consent discussion. Seventy-seven per cent solicit an expression of willingness to accept the proposed care from the patient. The majority (74%) of the surgeons perceived patient cooperation/understanding as the biggest barrier to obtaining assent. Over half of the respondents would consider proceeding with elective surgery despite the adolescent patient’s refusal. Reasons cited for proceeding with elective surgery include surgeons’ perception of medical necessity, perceptions of disease urgency, and lack of patient maturity.ConclusionPaediatric surgeons largely acknowledge the importance of assent, but variably practice the principles of obtaining assent from adolescent patients undergoing elective reconstructive procedures. Fewer surgeons are explicitly aware of formal policy statements or received formal training. Additional surgeon education and institutional policies are warranted to maximise inclusion of adolescents in their medical care. (shrink)

In ‘The ethics of consent during labour and birth: episiotomies,’ van der Pijl et al 1 respond to the prevalence of unconsented procedures during labour, proposing a set of necessary features for adequate consent to episiotomy. Their model emphasises information sharing, value exploration and trust between a pregnant person and their healthcare provider(s). While focused on consent to episiotomy, van der Pijl et al contend their approach may be applicable to consent for other procedures during labour and beyond pregnancy-related care. (...) One feature of their model for adequate informed consent is trust in the systems in which prenatal and labour and delivery care are provided. Yet, for some pregnant persons, mistrust in health systems is a reasonable sequela of experiences like racism and epistemic injustice. For a programme in which trust is central to adequate consent, it is important to identify—and counter—forms of mistrust toward pregnant persons within healthcare and acknowledge and rectify reasonable mistrust of pregnant persons toward healthcare. Like other kinds of healthcare disparities, van der Pijl et al note that ‘the burden of unconsented procedures is not evenly distributed over groups’ and tracks with ‘racial, socioeconomic and other disparities in maternity care’. They are drawing on data from a less diverse context than the one …. (shrink)

Loneliness has been a major concern for philosophers, poets and psychologists for centuries. In the past several decades, it has concerned clinicians and public health practitioners as well. The research on loneliness is urgent for several reasons. First, loneliness has been and still is extremely ubiquitous, potentially affecting people across multiple demographics and geographical areas. Second, it is philosophically intriguing, and its analysis delves into different branches of philosophy including phenomenology, existentialism, philosophy of mind, etc. Third, empirical research has shown (...) that loneliness is a significant health risk factor. Loneliness may thus be defined as a (negative) social determinant of health.Having that said, COVID-19 has demonstrated how little we as members of humanity have been prepared to face the loneliness resulting from the global response to the virus. As people worldwide are literally dying from loneliness, we still do not know what makes one feel lonely while making another feel being in solitude, or how is it that one feels lonely in the heart of London.In this essay, I first review loneliness in general and specifically in the context of COVID-19. I then argue that loneliness should be understood as a social determinant of health. Lastly, I argue that individuals have a right not to be lonely. Such right stems in turn from the right to healthcare or even a right to health. (shrink)

An episiotomy is ‘an intrapartum procedure that involves an incision to enlarge the vaginal orifice,’1 and is primarily justified as a way to prevent higher degrees of perineal trauma or to facilitate a faster birth in cases of suspected fetal distress. Yet the effectiveness of episiotomies is controversial, and many professional bodies recommend against the routine use of episiotomies. In any case, unconsented episiotomies are alarmingly common, and some care providers in obstetric settings often fail to see consent as necessary (...) in context. In their article, ‘The ethics of consent during labour and birth: episiotomies,’ van der Pijl et al reiterate that consent is necessary for episiotomies. They specify, further, that the antenatal period is crucial for exchanging information, establishing trust between the birthing subject and provider, and exploring the birthing subject’s—rather than the care provider’s—values and preferences regarding episiotomies. They recommend an individualised approach, which would enable birthing subjects to choose how and when they want to give consent. I applaud van der Pijl et al on their practicable recommendations regarding consent for episiotomies. This is certainly a step in the right direction where respect for birthing subjects’ bodily autonomy and integrity is concerned. Still, we must be reminded that consent alone is not coextensive with autonomy. The conditions for securing informed consent in healthcare does not guarantee that one’s decision is truly reflective of their values. After all, even valid consent does not rule out ‘normatively significant external influence’.2 Consent acquisition for obstetric procedures present no …. (shrink)

The authors of the feature article argue against implied consent in all episiotomy cases, but allow that opt-out consent might be appropriate in limited circumstances.1 However, they do not indicate how clinicians should assess whether the pregnant person is capable of consenting in this way during an obstetric emergency. This commentary will focus on how capacity should be determined during these circumstances, suggest next steps for clinicians if capacity is deemed uncertain or absent, and discuss the appropriate role for opt-out (...) consent in labour. Previous studies investigating the extent to which pregnant persons retain decision-making capacity during labour have shown poor recall, a component of capacity, about consent processes during obstetric emergency procedures in 14%–49% of cases.1 2 As the feature article acknowledges, this does not mean that pregnant persons should be assumed to lack decision-making capacity during labour. Although pain, labour intensity, exhaustion and medications can make consenting processes during labour more difficult and it is possible that these factors will result in the impaired ability of the pregnant person to make informed and voluntary decisions about treatment options, this possibility of impaired capacity should not be taken as the expected outcome nor should it be used as an excuse to skip consenting procedures.1 2 The default to treat labouring patients as able to make their own decisions still stands, although signs that a person lacks …. (shrink)

We agree with van der Pijl et al that the question of how to ensure consent is obtained for procedures which occur during labour and childbirth is vitally important, and worthy of greater attention.1 However, we argue that the modified opt-out approach to consent outlined in their paper may not do enough to protect the choice and agency of birthing people. Moreover, while their approach reflects a pragmatic attempt to facilitate legal clarity and certainty in this context, this is not (...) necessarily responsive to the messy realities of decision-making during labour (and beyond). We outline some of our concerns with their proposals and demonstrate how these illuminate some broader, longstanding tensions around consent and medical law. The authors place significant focus on the particularities of labour, outlining six ways in which maternity care is ‘unlike the usual healthcare setting’ (van der Pijl M et al,1p4). We support the need for attentiveness to these particularities and the problematic nature of consent in this context. Recent scholarly attention on the possible ‘political, ethical and theoretical implications and meanings of birthing embodiment’ (Chadwick R,2p2) has invited more nuanced conversation about consent, agency and decision-making during labour. However, while recognising the embodied particularities of labour, we must also avoid essentialising the differences of labouring bodies and thereby reinforcing exclusionary norms of consent. This points to a long-standing tension in feminist theory between the universal and the particular; between recognising and responding to the powerlessness of individuals without …. (shrink)

We are in the midst of a global crisis of climate change and environmental degradation to which the healthcare sector directly contributes. Yet conceptions of health justice have little to say about the environment. They purport societies should ensure adequate health for their populations but fail to require doing so in ways that avoid environmental harm or injustice. We need to expand our understanding of health justice to consider the environment and do so without reinforcing the epistemic injustice inherent in (...) the field of bioethics. This paper considers what work in philosophy related to the environment should be applied to help build that understanding and develops ideas about the healthcare sector’s responsibilities of justice to the environment. It first introduces the dominant multivalent environmental and ecological justice (EJ) concept in philosophy and each of its dimensions: distribution, participation, recognition and well-being. It then shows why applying that conception alone to broaden our understanding of health justice will reinforce epistemic injustice within bioethics. Drawing on EJ literature from the global South, the paper demonstrates that different ontological and experiential starting points identify additional EJ dimensions—power and harmony—and give rise to a nuanced understanding of the recognition dimension relative to the dominant EJ conception. The paper concludes by applying them to articulate healthcare sector responsibilities of justice to the environment, demonstrating they ground responsibilities beyond reducing its carbon emissions. (shrink)

Van der Pijl et al outline data suggesting an alarmingly high incidence of violation of the bodily integrity of patients in labour, including episiotomies performed without patients’ consent, or over their explicit objection.1 Similar data have been reported from the USA and Canada.2 The authors appropriately conclude that explicit consent is required at the time of all invasive obstetrical procedures, including episiotomy. Commonsense adjustments to the duration and detail of consent under conditions of clinical urgency are appropriate and should be (...) familiar to any clinician involved in perinatal care, as well as non-obstetric proceduralists caring for acutely ill patients. However, complete omission of consent for any of these procedures is both disrespectful to patients’ autonomy and strongly associated with morbidity from birth-related psychosocial trauma.3–5 The true incidence of obstetrical procedures performed without patients’ consent is difficult to determine for multiple reasons, including sample selection, recall bias and patients’ reluctance to reengage with traumatic experiences; however, …. (shrink)

The timely feature article by van der Pijl et al 1 highlights not only the widespread frequency with which unconsented episiotomies and other procedures during labour are reported by women but also that there is hardly any discussion in the literature on the ethics of consent for procedures in labour. Those national and international bodies with responsibility for midwifery and obstetric practice need not only to recognise but also act to remedy this unacceptable situation. The studies quoted used the recollection (...) of women in reporting consent or lack of it and, although this is an entirely appropriate measure, it gives no insight into what, if any, informed decision-making the care providers carried out. Such information would be useful to determine how better practice might be achieved. A study into the practice of episiotomies by Dutch midwives and obstetricians is referred to and is not reassuring.2 They frequently expressed surprise that consent should be necessary and women were minimally involved in the decision for performing episiotomy. This and other examples quoted of lack of valid consent have a corrosive effect on the fundamental but fragile trust and necessary trustworthiness of the relationship between the person being cared for …. (shrink)

IntroductionSwitzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is performed by private right-to-die organisations. Traditionally, assistance in suicide is considered contrary to the philosophy of palliative care. Nonetheless, Swiss palliative care physicians regularly receive patient requests for suicide assistance. Their attitudes towards the legal regulations of this practice and their experience in this context remain unclear.ObjectivesOur study aimed to explore (...) and describe the attitudes and experiences of Swiss palliative care physicians concerning the legal situation of suicide assistance.MethodsIn 2019, we performed an exploratory interview study with 12 Swiss palliative care physicians on palliative sedation as an alternative to assisted suicide. In this paper, we present the results that emerged from a thematic subanalysis of the data.ResultsParticipants stated that assistance in suicide and palliative care are based on opposing philosophies, but they admitted a shift in paradigm over the last years in the sense that one practice does not necessarily exclude the other. They reported various roles in suicide assistance and considered that the current activities of Swiss right-to-die organisations were problematic and needed to be regulated by law.Discussion and conclusionThese results could enrich national and international reflection on suicide assistance in the context of palliative care by reducing confusion between the two practices and strengthening the confidence of patients and their relatives. (shrink)

Unconsented episiotomies and other procedures during labour are commonly reported by women in several countries, and often highlighted in birth activism. Yet, forced caesarean sections aside, the ethics of consent during labour has received little attention. Focusing on episiotomies, this paper addresses whether and how consent in labour should be obtained. We briefly review the rationale for informed consent, distinguishing its intrinsic and instrumental relevance for respecting autonomy. We also emphasise two non-explicit ways of giving consent: implied and opt-out consent. (...) We then discuss challenges and opportunities for obtaining consent in labour and birth, given its unique position in medicine.We argue that consent for procedures in labour is always necessary, but this consent does not always have to be fully informed or explicit. We recommend an individualised approach where the antenatal period is used to exchange information and explore values and preferences with respect to the relevant procedures. Explicit consent should always be sought at the point of intervening, unless women antenatally insist otherwise. We caution against implied consent. However, if a woman does not give a conclusive response during labour and the stakes are high, care providers can move to clearly communicated opt-out consent. Our discussion is focused on episiotomies, but also provides a useful starting point for addressing the ethics of consent for other procedures during labour, as well as general time-critical medical procedures. (shrink)

An expanding policy framework aimed at monitoring alcohol consumption during pregnancy has emerged. The primary justification is prevention of harm from what is termed ‘prenatal alcohol exposure’ (PAE), by enabling more extensive diagnosis of the disability labelled fetal alcohol spectrum disorder (FASD). Here we focus on proposals to include biomarkers as a PAE ‘screening tool’, specifically those found in meconium (the first newborn excrement), which are discussed as an ‘objective’ measure of PAE.We ask the overarching question, ‘Can routine screening of (...) meconium to establish PAE be ethically or legally justified’, and we answer, ‘No’. To reach this conclusion, we discuss three areas. First, we consider the reasons why meconium screening should not be deemed ‘typical’ within the scope of accepted screening tools. We argue that given the aim and necessary timing of the screen, it cannot achieve what it promises. Second, we outline why patient autonomy and consent are not properly accounted for and cannot be reconciled with the ‘routinisation’ of the proposed ‘screening’. Last, we outline why the benefit of such a screen is not clear, focusing on the significance of trust in healthcare professionals (HCP) for the best interests of the future child and pregnant woman.While recognising the adverse effects of heavy alcohol consumption during pregnancy, we emphasise the case for robust ethical, legal and social considerations and the central need for trust between HCP and patients in maternity care. We conclude the permissibility of meconium screening has not been proven, and it is not justified. (shrink)

In an April 2023 article in JAMA Pediatrics, ‘Life Support System for the Fetonate and the Ethics of Speculation’, authors De Bie, Flake and Feudtner critique bioethicists for practising what they call ‘speculative ethics’. The authors refer to a 2017 article that they published on the Extra-uterine Environment of Neonatal Development (EXTEND) system. This system was able to keep fetonatal (newborn, but in a fetal physiological state) lambs alive outside of the parent lamb’s womb for 4 weeks. The article has (...) been accessed almost 300 000 times and received significant media attention. It also resulted in an explosion in the bioethics literature about ‘the ethics of the artificial womb’. However, the authors bemoan, these ethics discussions focused largely on unrealistic use cases of the new technology—from elective shortening of pregnancies to complete ectogenesis. The authors dubbed these discussions as ‘a technically and developmentally naive, yet sensationally speculative, pipe dream’. The use case of the EXTEND technology that is most realistic involves supporting extremely premature newborns (23–24 weeks). Other probable uses include supporting infants in later gestational ages (25–28 weeks) with pathological conditions, potentially allowing for surgeries or other therapeutics to be delivered without imposing risks on pregnant patients. To …. (shrink)

Some physicians, in their care of patients at risk of misusing opioids, use machine learning (ML)-based prediction drug monitoring programmes (PDMPs) to guide their decision making in the prescription of opioids. This can cause a conflict: a PDMP Score can indicate a patient is at a high risk of opioid abuse while a patient expressly reports oppositely. The prescriber is then left to balance the credibility and trust of the patient with the PDMP Score. Pozzi1 argues that a prescriber who (...) downgrades the credibility of a patient’s testimony based on a low PDMP Score is epistemically and morally unjustified and contributes to a form of testimonial injustice. This results in patients being silenced, excluded from decision-making processes and subjected to structural injustices. Additionally, the use of ML systems in medical practices raises concerns about perpetuating existing inequalities, overestimating their capabilities and displacing human authority. However, almost the very same critiques apply to human-based systems. Formalisation, ML systems included, should instead be viewed positively,2 and precisely as a powerful means to begin eroding these and other problems in ethically sensitive domains. In this case, the epistemic virtues of formalisation include promoting transparency, consistency and replicability in decision making. Rigorous ML systems can also help ensure that models …. (shrink)

Pozzi1 has thoroughly analysed testimonial injustices in the automated Prediction Drug Monitoring Programmes (PDMPs) case. Although Pozzi1 suggests that ‘the shift from an interpersonal to a structural dimension … bears a significant moral component’, her topical investigation does not further conceptualise the type of collective knowledge practices necessary to achieve epistemic justice. As Pozzi1 concludes: ‘this paper shows the limitations of systems such as automated PDMPs, it does not provide possible solutions’. In this commentary, we propose that an Ubuntu perspective—which, (...) so far, has received little attention in connection with epistemic injustice in medical machine learning (MML)—can fill this gap. This perspective can be used to mitigate some of the harmful effects of epistemic injustices by encouraging community involvement and forward-looking responsibility. It may be instructive to note first and foremost that the debate on epistemic justice and artificial intelligence in medicine has mostly been restricted to the Western World, that is, Europe and North America. There has been very little insight or accommodation of insights from the Global South. Ubuntu is a concept originating from Southern Africa that focuses on the close connections and mutual …. (shrink)

Giorgia Pozzi’s feature article1 on the risks of testimonial injustice when using automated prediction drug monitoring programmes (PDMPs) turns the spotlight on a pressing and well-known clinical problem: physicians’ challenges to predict patient behaviour, so that treatment decisions can be made based on this information, despite any fallibility. Currently, as one possible way to improve prognostic assessments of patient behaviour, Machine Learning-driven clinical decision support systems (ML-CDSS) are being developed and deployed. To make her point, Pozzi discusses ML-CDSSs that are (...) supposed to deliver physicians an accurate estimation of the likelihood of narcotic, sedative and stimulant opioid misuse by a given patient (like, e.g., ‘NarxCare’). Regarding cases of deviating assessment between human evaluators and automated systems, the medico-ethical discussion has so far mainly focused on disagreement between clinicians and Machine Learning (ML) algorithms,2 for example in ‘second opinions’ that have been reconstructed as disagreements between physician testimony and ML-CDSS testimony.3 Examples such as those of PDMPs, by contrast, draw attention to situations in which patient testimony potentially contradicts ML-CDSS testimony. Pozzi examines decision-making situations in which ML-CDSS testimony factually overrides the testimony of the person affected. Thus, in the presented case of patient Kathryn, the testimony of her own physical and mental condition was insufficient to overturn the unfavourable outcome for …. (shrink)

This article outlines and compares current and proposed global institutional mechanisms to increase equitable access to COVID-19 vaccines, focusing on their institutional and operational complementarities and overlaps. It specifically considers the World Health Organization's (WHO’s) COVAX (COVID-19 Vaccines Global Access) model as part of the Access to COVID-19 Tools Accelerator (ACT-A) initiative, the WHO’s COVID-19 Technology Access Pool (C-TAP) initiative, the proposed TRIPS (Trade-Related Aspects of Intellectual Property Agreement) intellectual property waiver and other proposed WHO and World Trade Organization technology (...) transfer proposals. We argue that while various individual mechanisms each have their specific individual merits—and in some cases weaknesses—overall, many of these current and proposed mechanisms could be highly complementary if used together to deliver equitable global access to vaccines. Nonetheless, we also argue that there are risks posed by the proliferation of proposals in this context, including the potential to disperse stakeholder attention or to delay decisive action. Therefore, we argue that there is now a clear need for concerted global multilateral action to recognise the complementarities of specific models and to provide a pathway for collaboration in attaining global equitable access to vaccines. The institutional infrastructure or proposals to achieve this amply exist at this point in time—but much greater cooperation from industry and clear, decisive and coordinated action from states and international organisations are urgently needed. (shrink)

Pozzi provides a thought-provoking account of how machine-learning clinical prediction models (such as Prediction Drug Monitoring Programmes (PDMPs)) may exacerbate testimonial injustice.1 In this response, I generalise Pozzi’s concerns about PDMPs to traditional models of clinical practice and question the claim that inaccurate clinicians are necessarily preferential to inaccurate machine-learning models. I then explore Pozzi’s concern that such models may deprive patients of a right to ‘convey information’. I suggest that machine-learning tools may be used to enhance, rather than frustrate, (...) this right, through the perspective of hermeneutical justice. Pozzi objects to the introduction of machine-learning risk prediction tools in clinical care, due to their being ‘epistemically opaque’, often inaccurate, and a threat to patients’ testimonial justice. Through the example of psychiatry, I suggest this stance idealises traditional models of clinical practice. I propose that clinicians’ judgements are often equally vulnerable to opaque subjectivity, bias and epistemic injustice. For instance, the use of clinical observation or collateral interviewing might be conceptualised as a threat to testimonial justice, by neglecting patients’ own perspectives or voices. In practice, clinical risk prediction often follows inconsistent and somewhat subjective clinical heuristics, which are difficult to summarise or evaluate. Further, although Pozzi diminishes machine-learning …. (shrink)

Kindness and its kindred concepts, compassion and empathy, are strongly valued in healthcare. But at the same time, health systems all too often treat people unfairly and cause harm. Is it possible that kindness actually contributes to these unkind outcomes? Here, I argue that, despite its attractive qualities, kindness can pose and perpetuate systemic problems in healthcare. By being discretionary, it can interfere with justice and non-maleficence. It can be problematic for autonomy too. Using the principalist lens allows us to (...) visualise kindness more clearly and to dissect out its key qualities. Ideally, kindness should be not just beneficent but also respectful of the person, fair and non-maleficent. I use examples to illustrate the adverse impacts when kindness runs short on each. Finally, I propose that we can improve on this, by diversifying our approach to inclusion. Outgroups should be more included, as a way to mitigate discrimination wrought by discretionary kindness. But we can do better. Ingroup health professionals too often sit ‘above the fray’. They should also be more included, but now as research subjects, so we can understand together how they benefit from discretionary kindness and deftly make it work for them and theirs. (shrink)

Medical assistance in dying, which includes voluntary euthanasia and assisted suicide, is legally permissible in a number of jurisdictions, including the Netherlands, Belgium, Switzerland and Canada. Although medical assistance in dying is most commonly provided for suffering associated with terminal somatic illness, some jurisdictions have also offered it for severe and irremediable psychiatric illness. Meanwhile, recent work in the philosophy of psychiatry has led to a renewed understanding of psychiatric illness that emphasises the role of the relation between the person (...) and the external environment in the constitution of mental disorder. In this paper, I argue that this externalist approach to mental disorder highlights an ethical challenge to the practice of medical assistance in dying for psychiatric illness. At the level of the clinical assessment, externalism draws attention to potential social and environmental interventions that might have otherwise been overlooked by the standard approach to mental disorder, which may confound the judgement that there is no further reasonable alternative that could alleviate the person’s suffering. At the level of the wider society, externalism underscores how social prejudices and structural barriers that contribute to psychiatric illness constrain the affordances available to people and result in them seeking medical assistance in dying when they otherwise might not have had under better social conditions. (shrink)

Intimacy contributes to our well-being and extends into older age, despite cognitive or physical impairment. However, the ability to enjoy intimacy and express sexuality is often compromised—or even controlled—when one moves into residential aged care. The aim of this study was to identify what factors influence senior residential aged care staff when they make decisions regarding resident intimate relationships and sexual expression. The study used vignette methodology and a postal survey to explore reactions to a fictionalised case study of a (...) couple—Norm and Carol—who develop a close, mutually satisfying relationship. Staff were first asked whether they would intervene in the relationship. Using an innovative approach, several variations to the case study were then presented to explore whether views about intervening changed according to varying contextual factors. Findings indicated that over 90% of respondents initially agreed that the relationship should continue, and only 10% indicated they would intervene. However, when the case study was varied, respondents indicated they were more likely to intervene, particularly if Norm was exhibiting distress in Carol’s presence (89%), but also if Norm was married and his wife was living in the community (40%). Other factors including level of cognitive impairment and family disapproval were also found to influence staff views. This study provides insight into how residential aged care staff make decisions regarding the intimacy and sexuality of older people living in residential aged care and how personal views and values likely guide practice in the absence of formal policies. (shrink)

Researchers are studying how artificial intelligence (AI) can be used to better detect, prognosticate and subgroup diseases. The idea that AI might advance medicine’s understanding of biological categories of psychiatric disorders, as well as provide better treatments, is appealing given the historical challenges with prediction, diagnosis and treatment in psychiatry. Given the power of AI to analyse vast amounts of information, some clinicians may feel obligated to align their clinical judgements with the outputs of the AI system. However, a potential (...) epistemic privileging of AI in clinical judgements may lead to unintended consequences that could negatively affect patient treatment, well-being and rights. The implications are also relevant to precision medicine, digital twin technologies and predictive analytics generally. We propose that a commitment to epistemic humility can help promote judicious clinical decision-making at the interface of big data and AI in psychiatry. (shrink)

In this paper, I argue that a commitment to a very modest form of egalitarianism—equality between non-disabled human adults—implies fetal personhood. Since the most plausible bases for human value are in being human, or in a gradated property, and since the latter of which implies an inequality between non-disabled adult humans, I conclude that the most plausible basis for human equality is in being human—an attribute which fetuses have.

In the article ‘Testimonial injustice in medical machine learning’, Pozzi argues that the prescription drug monitoring programme (PDMP) leads to testimonial injustice as physicians are more inclined to trust the PDMP’s risk scores over the patient’s own account of their medication history.1 Pozzi further develops this argument by discussing how credibility shifts from patients to machine learning (ML) systems that are supposedly neutral. As a result, a sense of distrust is now formed between patients and physicians. While there are merits (...) to Pozzi’s main argument of epistemic injustice caused by PDMPs, Pozzi mentions but ultimately glosses over the problem of automation bias. In this commentary, I will discuss automation bias and the affect it has on clinical decision making as well as a technical problem exacerbated by the usage of PDMPs that can potentially cause physical harms. It is reiterated in the article that the confidence physicians have in the PDMP’s risk scores over the patient’s testimony leads to misplaced trust in the ML systems. What Pozzi describes here is known as automation bias, which occurs when there is an over-reliance on ML systems. …. (shrink)

In my paper entitled ‘Testimonial injustice in medical machine learning’,1 I argued that machine learning (ML)-based Prediction Drug Monitoring Programmes (PDMPs) could infringe on patients’ epistemic and moral standing inflicting a testimonial injustice.2 I am very grateful for all the comments the paper received, some of which expand on it while others take a more critical view. This response addresses two objections raised to my consideration of ML-induced testimonial injustice in order to clarify the position taken in the paper. The (...) first maintains that my critical stance toward ML-based PDMPs idealises standard medical practice. Moreover, it claims that the ML-induced testimonial injustice I discuss is not substantially different from situations in which it emerges in human–human interactions. The second claims that my analysis does not establish a link to issues of automation bias, even if these are to be considered the core of testimonial injustice in ML. In the following, I address each objection in turn. Gillett3 argues that my critical stance towards using risk prediction tools such as PDMPs implies the idealisation of standard (ie, non-ML-mediated) modes of clinical practice. Considering certain uses of ML in a different setting, that is, psychiatry, the author goes as far as claiming that ‘traditional models of clinical practice in psychiatry are far from a utopia, free from epistemic injustice, which Pozzi’s argument risks proposing’. Since this statement does not represent what I intend to suggest, I am glad to have the possibility to clarify …. (shrink)

Machine learning (ML) systems play an increasingly relevant role in medicine and healthcare. As their applications move ever closer to patient care and cure in clinical settings, ethical concerns about the responsibility of their use come to the fore. I analyse an aspect of responsible ML use that bears not only an ethical but also a significant epistemic dimension. I focus on ML systems’ role in mediating patient–physician relations. I thereby consider how ML systems may silence patients’ voices and relativise (...) the credibility of their opinions, which undermines their overall credibility status without valid moral and epistemic justification. More specifically, I argue that withholding credibilitydue tohow ML systems operate can be particularly harmful to patients and, apart from adverse outcomes, qualifies as a form of testimonial injustice. I make my case for testimonial injustice in medical ML by considering ML systems currently used in the USA to predict patients’ risk of misusing opioids (automated Prediction Drug Monitoring Programmes, PDMPs for short). I argue that the locus of testimonial injustice in ML-mediated medical encounters is found in the fact that these systems are treated asmarkers of trustworthinesson which patients’ credibility is assessed. I further show how ML-based PDMPs exacerbate and further propagate social inequalities at the expense of vulnerable social groups. (shrink)

Megan1 is a young teenage patient who suffered a stillbirth at 28 weeks, leading to a year long police investigation dropped only after postmortem tests found that her pregnancy was lost due to natural causes. The stress of the investigation and her isolation from friends and support network following the seizure of her mobile and laptop compounded the trauma of the stillbirth, leaving her requiring emergency psychiatric care. Aisha1 is a vulnerable patient who suffered a premature delivery, having experienced similar (...) problems in earlier pregnancies. Things happened so quickly that Aisha delivered on her own at home, only then seeking medical care. She told hospital staff that earlier in her pregnancy she had considered an abortion. As a result, she found herself interviewed under police caution and was required to surrender her phone and tablet, limiting access to friend and family support just when most needed. Aisha was denied unsupervised access to her baby in the intensive care unit, needing to hand over expressed breast milk to a receptionist. These stories, which were reported in a recent meeting in Parliament,1 are sadly far from unusual. They reflect the collateral damage of a growing trend towards more enthusiastic enforcement of the archaic abortion laws of England and Wales.2–5 In such cases, women who present with miscarriage, stillbirth or a premature delivery have aroused the suspicion of health professionals, sometimes because—like Aisha—they speak honestly about having considered abortion earlier in their pregnancies. They then find themselves reported to the police, required to surrender electronic devices and sometimes advised by duty solicitors to speak to no one about events leading to their investigation, thus being denied emotional and full clinical support at a time of significant trauma. These women are not the only victims of British abortion laws: so …. (shrink)

The authors respond to four JME commentaries on their Feature Article, ‘Autonomy-based criticisms of the patient preference predictor’.

Professional providers of mental health services are motivated to help people, including, or especially, vulnerable people. We analyse the ethical implications of mental health providers accepting employment at detention centres that operate out of the normal regulatory structure of the modern state. Specifically, we examine tensions and moral harms experienced by providers at the Australian immigration detention centre on the island of Nauru. Australia has adopted indefinite offshore detention for asylum-seekers arriving by boat as part of a deterrence strategy that (...) relies on making detainment conditions harsh. This has known deleterious mental health effects. As a token to fiduciary care obligations, Australia employs mental health professionals to work on Nauru. These providers are often motivated to make a positive difference for detainees’ lives. We examine the overall impact of the providers’ work with detainees and the implications of their presence. The strongest evidence supports that the small mitigation of harms offered by these providers does not outweigh the harms of supporting a system designed to perpetuate human suffering. For mental health professionals considering working in offshore detention, we offer specific topics to scrutinise and weigh prior to employment. Because optimising detainee’s mental health is beyond the capacity of individual providers, we call for the organisations standardising and supporting mental health professionals to oppose employment of their associates in offshore detention. Lessons from this case study are generalisable to other jurisdictions to help inform organisations that licence and support mental health providers and individual providers considering work in similar settings. (shrink)

Mill’s proscription that ‘the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others’ has become almost axiomatic in bioethics. 1 Bolstered by the rise of patient autonomy during the mid-20th century, Millian conceptions of freedom have become so embedded in bioethical theory, that attempts to justify paternalism have typically involved making one of two claims. Either, they have involved refuting the significance of autonomy as (...) an ethical principle, and questioning whether it should always be taken to outweigh other ethical principles. Or, they have sought to cast doubt on the autonomous quality of specific decisions, challenging them as non-autonomous in some important way. Both approaches are readily apparent in discussions about the moral authority of advance directives, where people have questioned both whether precedent autonomy should always outweigh the person’s current best... (shrink)

In several jurisdictions, irremediable suffering from a medical condition is a legal requirement for access to assisted dying. According to the expressivist objection, allowing assisted dying for a specific group of persons, such as those with irremediable medical conditions, expresses the judgment that their lives are not worth living. While the expressivist objection has often been used to argue that assisted dying should not be legalised, I show that there is an alternative solution available to its proponents. An autonomy-based approach (...) to assisted suicide regards the provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests. Such an approach has been put forward by a recent judgment of the German Federal Constitutional Court, which understands assisted suicide as an expression of the person’s right to a self-determined death. It does not allow for beneficence-based restrictions regarding the person’s suffering or medical diagnosis and therefore avoids the expressivist objection. I argue that on an autonomy-based approach, assisted suicide should not be understood as a medical procedure but rather as the person’s autonomous action. (shrink)

In her article Reification and assent in research involving those who lack capacity, Anna Smajdor shows how excluding adults with impairments of capacity (AWICs) to protect them from the risks of medical research has the paradoxical effect of harming them by reifying them.1 While the medical risks of excluding vulnerable populations in general from medical research are well known, the main risk being the creation of therapeutic orphans, the risk of reifying these populations is less discussed. Hence, we commend Smajdor (...) for introducing an essential nuance in the debate on inclusion of AWICs in medical research. We also agree with her on the importance of acquiring assent from those who cannot legally consent rather than automatically excluding them from research, as we already do in paediatric research. However, we believe that she fails to acknowledge some practical challenges already observed in paediatric research that hinder the retrieval of assent from AWICs and, consequently, their inclusion in medical research. In this commentary, we will first introduce the main challenge to using assent to include AWICs in research, that is, the fact that individuals might oscillate within the capacity spectrum. We will then provide other examples of practical obstacles to the inclusion of AWICs …. (shrink)

Regarding the appropriateness of deception in clinical practice, two (apparently conflicting) claims are often emphasised. First, that ‘clinicians should not deceive their patients.’ Second, that deception is sometimes ‘in a patient’s best interest.’ Recently, Hardman has worked towards resolving this conflict by exploring ways in which deceptive and non-deceptive practices extend beyond consideration of patients’ beliefs. In short, some practices only seem deceptive because of the (common) assumption that non-deceptive care is solely aimed at fostering true beliefs. Non-deceptive care, however, (...) relates to patients’ non-doxastic attitudes in important ways as well. As such, Hardman suggests that by focusing on belief alone, we sometimes misidentify non-deceptive care as ‘deceptive’. Further, once we consider patients’ beliefs and non-doxastic attitudes, identifying cases of deception becomes more difficult than it may seem. In this essay, I argue that Hardman’s reasoning contains at least three serious flaws. First, his account of deception is underdeveloped, as it does not state whether deception must be intentional. The problem is that if intention is not required, absurd results follow. Alternatively, if intention is required, then identifying cases of deception will be much easier (in principle) than Hardman suggests. Second, Hardman mischaracterises the ‘inverse’ of deceptive care. Doing so leads to the mistaken conclusion that common conceptions of non-deceptive care are unjustifiably narrow. Third, Hardman fails to adequately separate questions about deception from questions about normativity. By addressing these issues, however, we can preserve some of Hardman’s most important insights, although in a much simpler, more principled way. (shrink)

BackgroundThe Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia.ObjectiveGain insight in paediatric experts’ views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have.MethodsA Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work (...) in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement.ResultsThe experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents’ opinion is relevant and should always be taken into account, but it need not be decisive.ConclusionThis study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further. (shrink)

Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need (...) not, and should not, be based on trust. Rather, they should be based on confidence. I begin by elucidating the differences between trust, reliability, and confidence, and argue that trust is not the appropriate attitude to adopt when it comes to sharing data with commercial companies. I argue that what we really should want is confidence in a system of data sharing. I then provide an outline of what a confidence-worthy system of data sharing with commercial companies might look like, and conclude with some remarks about the role of trust within this system. (shrink)

On one hand, it is commonly accepted that clinicians should not deceive their patients, yet on the other there are many instances in which deception could be in a patient’s best interest. In this paper, I propose that this conflict is in part driven by a narrow conception of deception as contingent on belief. I argue that we cannot equate non-deceptive care solely with introducing or sustaining a patient’s true belief about their condition or treatment, because there are many instances (...) of clinical care which are non-doxastic and non-deceptive. Inasmuch as this is true, better understanding of non-doxastic attitudes, such as hope and pretence, could improve our understanding of deception in clinical practice. (shrink)

In my recent article,Pretending to care, I argue that a better understanding of non-doxastic attitudes could improve our understanding of deception in clinical practice. In an insightful and well-argued response, Colgrove highlights three problems with my account. For the sake of brevity, in this reply I focus on the first: that my definition of deception is implausible because it does not involve intention. Although I concede that my initial broad definition needs modification, I argue that it should not be modified (...) by involving intention but by involving responsibility. (shrink)

In response to the COVID-19 pandemic, large-scale research and pharmaceutical regulatory processes have proceeded at a dramatically increased pace with new and effective, evidence-based COVID-19 interventions rapidly making their way into the clinic. However, the swift generation of high-quality evidence and the efficient processing of regulatory authorisation have given rise to more specific and complex versions of well-known research ethics issues. In this paper, we identify three such issues by focusing on the authorisation of molnupiravir, a novel antiviral medicine aimed (...) at reducing the ability of SARS-CoV-2 to multiply in the body, for clinical use by the National Health Service in England and the concomitant testing of molnupiravir through the large-scale Platform Adaptive trial of Novel antiviRals for eArly treatMent of COVID-19 In the Community randomised control trial. By analysing the ways in which the authorisation and clinical use of molnupiravir complicate standard approaches to clinical equipoise, standard of care and participant consent in the PANORAMIC randomised control trial, we will explain some of ethical implications for clinical trials that aim to study the efficacy and safety of new COVID-19 and other therapeutics when conditional authorisation has already been granted and when such treatments have already been made available to patients by national health providers. (shrink)

The 2018 eligibility regulation for female competitors with differences of sexual development (DSD) issued by World Athletics requires competitors with DSD with blood testosterone levels at or above 5 nmol/L and sufficient androgen sensitivity to be excluded from competition in certain events unless they reduce the level of testosterone in their blood. This paper formalises and then critically assesses the fairness-based argument offered in support of this regulation by the federation. It argues that it is unclear how the biological advantage (...) singled out by the regulation as an appropriate target for diminishment, is relevantly different from other biological advantages that athletes may enjoy, and specifically that Sigmund Loland’s recent attempt to drive a wedge between heightened levels of blood testosterone and other biological advantages fails. The paper also suggests that even if heightened blood testosterone levels do differ relevantly from other types of biological advantage, the regulation is further challenged by studies indicating that athletes with blood testosterone at the high end of the normal range have a competitive advantage over athletes with blood testosterone levels at the low end of it. Finally, the paper contends that the premises of the fairness-based argument do not unequivocally support the conclusion that DSD athletes with heightened levels of testosterone should diminish those levels, since, just as powerfully, they support allowing athletes with normal levels of testosterone to use performance-enhancing drugs in the name of fairness. (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)

On July 2021, the UK High Court of Justice heard the Case CO/2066/2020 on the application of Heidi Crowter who lives with Down’s syndrome, and Máire Lea-Wilson whose son Aidan has Down’s syndrome. Crowter and Lea-Wilson, with the support of the disability rights campaign, ‘Don’t Screen Us Out’, have been taking legal action against the Secretary of State for Health and Social Care (the UK Government) for a review of the 1967 Abortion Act: the removal of section 1(1)(d) making termination (...) of pregnancy lawful for ‘severe’ fetal indications detected after 24 weeks' gestation. On 23 September 2021, the High Court dismissed the claim. This action came at a time when non-invasive prenatal testing (NIPT) was introduced into the NHS England Fetal Anomaly Screening Programme for the trisomies 21, 13 and 18. The implementation of NIPT has been heavily criticised, in particular by ‘Don’t Screen Us Out’ campaigners, for increasing fetal selection and discrimination of people living with disabilities. The case of Crowter and Lea-Wilson echoes debates in other European countries such as in France and Germany, where the introduction of NIPT in the public healthcare system has provoked equally vehement public reactions and discussions. The comparison between these three countries allows contextualising the public discourses around NIPT and the ground for termination of pregnancy in relation to different socio-cultural and political contexts. We examine how each country, and particularly England, deals with the conflict between the principles of promoting the rights of people living with disabilities and preserving women’s reproductive autonomy. (shrink)

Smajdor addresses the problem of inferior clinical outcomes among adults with impairments of capacity to give informed consent (AWIC). She notes that AWIC are generally excluded from clinical trials to protect them against harms and avoid exploitation and claims there is a causal link between involvement in clinical trials and favourable outcomes. She argues, given this link, that we should increase AWIC representation in clinical trials and can justifiably do so by recognising the capacity of AWIC to assent. AWIC form (...) a diverse group, with multiple aetiologies, including, for example, Down syndrome, traumatic brain injury and dementia. In some cases, the inability to consent may fluctuate so that the same person could be AWIC only at certain times. Yet despite these differences, the group has a shared unmet need. We agree with Smajdor that AWIC outcomes should be improved, but question whether simply increasing representation in clinical trials is sufficient to achieve this. We identify the following points: 1. AWIC are under-represented in clinical trials. There is evidence of widespread exclusion of AWIC in clinical trials within the UK and abroad and it is often a specific exclusion criterion.1 2. AWIC have worse clinical outcomes and a lower life expectancy. The life expectancy …. (shrink)

Smajdor’s Reification and Assent in Research Involving Those Who lack Capacity claims, among other things, that ‘adults who cannot give informed consent may nevertheless have the ability to assent and dissent, and that these capacities are morally important in the context of research’.1 More pointedly, she suggests we can rely upon Gillick competence, or that ‘it is worth thinking about why the same trajectory [as children] has not been evident in the context of [adults with impairments of capacity to give (...) informed consent (AWIC)]’.1 I argue that her likening assent in AWIC to assent in children is problematic for at least two related reasons. First, direct comparisons between AWIC and children run the risk of perpetuating or reinforcing infantilising stereotypes against people with disabilities. Second, I argue that people with disabilities are vulnerable in ways that most children are not, and thus, are dissimilar in a morally relevant manner. The infantilising of people with disabilities is quite widely documented and thought to be deeply problematic.2 Not only are people with disabilities often thought to be infantile in regard to particular …. (shrink)

The recent wave of medical assistance in dying legalisation raises questions about proper oversight of the practice as new systems for data collection, case assessment and public reporting emerge. Newer systems, such as in Spain, New Zealand and Colombia, are eschewing the retrospective approach used for case assessment in older systems, particularly those in the Netherlands, Belgium and the USA, in favour of an approach requiring more extensive review prior to the procedure. This shift aims to increase compliance with each (...) jurisdiction’s specific safeguards and legal criteria as well as to protect vulnerable patients, but also risks stifling access to the practice and increasing administrative burden on clinicians and patients. Newer systems also tend to favour more extensive data collection than older systems, while failing to be as transparent with public reporting. Inconsistency in data collection and public reporting make it difficult for researchers, policymakers and the public to assess the practice and help achieve a balance between access and compliance. Research on oversight activities is sparse, and there is a need for clarity to determine how best to handle violations of the law and how to create best practices. (shrink)

In applied ethics, and in medical treatment and research, the question of how we should treat others is a central problem. In this paper, I address the ethical role of assent in research involving human beings who lack capacity. I start by thinking about why consent is ethically important, and consider what happens when consent is not possible. Drawing on the work of the German philosopher Honneth, I discuss the concept of reification—a phenomenon that manifests itself when we fail to (...) observe or respond to our fellow humans’ need for recognition. I suggest that assent is a way of responding to this moral need for recognition, which exists independently of cognitive capacity. I will look at the circumstances in which consent cannot be obtained from human beings, and ask whether some of the same ethically important considerations that underpin the need for consent might be achieved through seeking assent. I discuss the ways in which this might be beneficial for researchers, for prospective research participants and for society at large. (shrink)

My paper on assent and reification in research involving adults with impairments of capacity and/or communication (AWIC)1 drew many thoughtful and insightful responses. I am grateful to all who submitted commentaries. Most agreed in principle that AWIC could be better represented in medical research. However, several commentators felt that further clarification was needed in terms of what assent is and how it should be obtained and operationalised.2 I fully agree that if increased representation of AWIC is to come about through (...) an assent-based approach, further clarificatory work is needed, and am glad to think my paper may function as a stimulus for this. Some commentators worry that an assent-based approach will impose heavy demands on researchers and entail higher costs.2 I acknowledge this, but would argue that if better inclusion of AWIC is a worthwhile goal, we should be willing to accept some costs. The move from an exclusionary to an inclusive approach will become less demanding once it is accepted as the default. And as I argue in my paper, we have resources on which to draw, including materials designed to facilitate comprehension and communication with AWIC that have been developed in other spheres,3 as well as existing protocols and structures that facilitate …. (shrink)

In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by (...) including the patient in a shared moral sphere, highlighting her agency and worth without reducing her to her incapacity or a thing-to-be-managed. Assent also avoids grounding in, or a reliance on, the future development of autonomy (pp.5–6).1 Our recent research on patient and caregiver perspectives of potential paediatric deep brain stimulation (pDBS) for refractory obsessive–compulsive disorder (OCD) and dystonia demonstrates that paediatric neurosurgery patients desire the kind of recognition Smajdor associates with assent, and their caregivers largely agree.2 3 Since (generally) paediatric patients in the USA are unable to grant informed consent, their caregivers must provide it instead. This raises the question of how to properly integrate paediatric patients into the DBS decision-making process. One dimension along which this is evident is that …. (shrink)

Anna Smajdor offers a fresh perspective on why assent is morally required in research practices involving people who (are considered to) lack the capacity to consent.1 Smajdor holds that seeking (and documenting) assent can be a mechanism to recognise those who (are considered to) lack the capacity to consent as participants ‘in our moral sphere’.1 Smajdor suggests that this approach can function as a counter to the ‘reifying’ attitudes (often) taken towards people who (are judged to) lack the capacity to (...) consent.1 Smajdor’s approach also offers novel resources to overcome what Giles Birchley characterise as ‘the problems of the binary approach to incapacity’.2 Particularly in the context of dementia research, Smajdor’s proposal can be seen as a promising direction for going beyond the conventional (primarily) ‘protective’ approach taken by research ethics committees.3 The conventional approach asks researchers to obtain autonomous authorisation from research participants and (at times, implicitly) relies on the assumption that the ability to give consent is the only autonomy-related ability or, in other words, the assumption that the inability to give consent indicates vulnerability due to non-autonomy/non-agency. But this assumption, as Smajdor notes, seems problematic. The ability to assent (or dissent) is also an autonomy-related ability. Many …. (shrink)

Smajdor invites welcome interrogation of the distance between our philosophical justifications of how we engage people in decisions about healthcare or research, and the ways we do so.1 She notes the implicit elision made between autonomy and informed consent, and argues the latter alone cannot secure the former, proposing a more flexible approach. As researchers working with people with dementia (PwD), we share Smajdor’s reservations. We argue that an autonomy worthy of respect requires not just decision-making capacity, but also authenticity; (...) the ability to determine for oneself what is good for oneself.2 Furthermore, our relationships support or undermine both capacity and authenticity, and autonomous expression manifests throughout evolving relationships. This invites us to view respect differently—as an ongoing conversation with another person, capable of holding values that may move us. In Smajdor’s terminology, it requires that we recognise them. We describe how we operationalise this in our research. Three broad arguments usually support respect for autonomy.2 One—owed to JS Mill—holds that permitting individuals free choice promotes utility of all, by helping them fulfil ideas of the good, demonstrating ‘experiments in living’. Another draws from Kant’s categorical imperative; its Formula of Humanity holds that the capacity to determine our own values gives us reason to act, and we ought, therefore, to treat others’ values with the respect we show our own. Lastly, many simply assume ‘liberal neutrality’—an intrinsic value in people being permitted to pursue the …. (shrink)

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. (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)