The coronavirus pandemic has brought to public attention a variety of questions long debated in medical ethics, but now given both added urgency and wider publicity. Among these is triage, with its origins in deciding which individual lives are to be saved on a battlefield, but now also concerned with the allocation of scarce resources more generally. On the historical battlefield, decisions about whom to treat first – neither those who would survive without treatment, nor those who would not survive (...) even with treatment, but those who needed treatment to survive – was facilitated by military discipline and the limited effectiveness of treatments available. In the allocation of scarce resources today, by contrast, such decisions are subject to intense public and political scrutiny, and the range of effective treatments available has immeasurably diminished the proportion of ‘those who would not survive even with treatment’. If triage decisions are to be made, they now need to be justified in the arena of public opinion by moral arguments which are also politically persuasive. A number of different aspects of what is required for this endeavour are examined in the first five contributions to this issue of the Journal. In ‘Should age matter in COVID-19 triage? A deliberative study ’1, Kuylen and colleagues report on a deliberative study of public views in the UK, in which participants ‘generally accepted the need for triage but strongly rejected ’fair innings’ and ’life projects’ principles as justifications for age-based allocation,…preferring to maximise the number of lives rather than life years saved’; and concerned that in any resolution ‘utilitarian considerations of efficiency should be tempered with a concern for equality and vulnerability’. A similar concern to temper utilitarian considerations, in this case with an Aristotelian view of the common good as ‘the good life for …. (shrink)

There exists in academic medicine a core ethical issue that is seldom pursued: trainees are frequently not the best person in the operating room at a given intervention being performed, and yet as a profession we understand a fundamental need to afford them opportunities to perform. Academic centres are traditionally associated with a higher quality of care than non-academic centres, suggesting that practical measures exist within teaching hospitals that effectively mask the clinical discrepancies between trainees and their preceptors. Nonetheless, we (...) are bound by our ethical commitments as physicians to balance the obligations of care with the duty to teach. In order to ethically validate the model of ‘surgeon as teacher’, we propose that there must be a reconciliation of the tensions between traditional professional values in medicine with the constraints inherent in a time-bound utilitarian medical system. Ultimately, we must consciously accept that ensuring the longitudinal availability of skilled surgeons in society aligns more closely with our core ethical obligations as outlined in the social contract that medical professionals maintain with the general public than does the ethical demand to provide unreservedly individual-focused patient care. It is the duty of individual practitioners, as a necessity of lineage to maintain and fulfil our greater duties to society, to foster deontological relationships where possible within this utilitarian system while accepting short-term imperfection in our practice. There are no data in this manuscript. (shrink)

The recent review by Monrad1 presents several issues about secondary vaccine trials. It lays out the case in which a vaccine has been tested through phases I–III and is being deployed. Subsequently, consideration is being given to conducting ‘trials for another vaccine for the pathogen’. Monrad states: ‘In summary, we may say that researchers have strong prima facie reasons not to conduct a secondary vaccine trial.’ Monrad discusses several factors meriting careful consideration about the need for developing and testing more (...) than one vaccine: relative efficacy, length of immunity, adverse reactions, ease of storage and administration, economic and logistical factors. What is not addressed are the ethical duties that exist when there are competing phase III vaccine candidates for COVID-19. We have serious concerns about potential ethical inadequacies about these ongoing trials and …. (shrink)

Although empirical evidence may provide a much desired sense of certainty amidst a pandemic characterised by uncertainty, the vast gamut of available COVID-19 data, including misinformation, has instead increased confusion and distrust in authorities’ decisions. One key lesson we have been gradually learning from the COVID-19 pandemic is that the availability of empirical data and scientific evidence alone do not automatically lead to good decisions. Good decision-making in public health policy, this paper argues, does depend on the availability of reliable (...) data and rigorous analyses, but depends above all on sound ethical reasoning that ascribes value and normative judgement to empirical facts. All data relevant to the study are included in the article. (shrink)

The use of black box algorithms in medicine has raised scholarly concerns due to their opaqueness and lack of trustworthiness. Concerns about potential bias, accountability and responsibility, patient autonomy and compromised trust transpire with black box algorithms. These worries connect epistemic concerns with normative issues. In this paper, we outline that black box algorithms are less problematic for epistemic reasons than many scholars seem to believe. By outlining that more transparency in algorithms is not always necessary, and by explaining that (...) computational processes are indeed methodologically opaque to humans, we argue that the reliability of algorithms provides reasons for trusting the outcomes of medical artificial intelligence. To this end, we explain how computational reliabilism, which does not require transparency and supports the reliability of algorithms, justifies the belief that results of medical AI are to be trusted. We also argue that several ethical concerns remain with black box algorithms, even when the results are trustworthy. Having justified knowledge from reliable indicators is, therefore, necessary but not sufficient for normatively justifying physicians to act. This means that deliberation about the results of reliable algorithms is required to find out what is a desirable action. Thus understood, we argue that such challenges should not dismiss the use of black box algorithms altogether but should inform the way in which these algorithms are designed and implemented. When physicians are trained to acquire the necessary skills and expertise, and collaborate with medical informatics and data scientists, black box algorithms can contribute to improving medical care. (shrink)

In this paper, we analyse the most important documents establishing the criteria for the treatment and exclusion of COVID-19 patients, especially in regard to the giving of respiratory support, in Italy and Spain. These documents reflect a tension that stems from limited healthcare resources which are insufficient to save lives that, under normal conditions, could have been saved, or at least could have received the best possible treatment. First, we analyse the healthcare systems of these two countries before the spread (...) of the virus, both of which have seen decreases in the number of intensive care beds and have been marked by financial cuts during the last ten years. It is a fact that a greater number of people, especially those over 70 years of age, have been left without respiratory support treatment, and therefore, there have been a greater number of deaths. It is also a fact that there has been a higher infection rate among healthcare professionals due to the delay in the management of protective measures and the inability to provide adequate care for those in nursing homes, as recognised by WHO. In the context of this health emergency, healthcare professionals have suffered a real ‘moral distress’ because, knowing first-hand the causes of the limitation of resources, they have had to put triage protocols into practice. Finally, we set forth a series of concrete ethical proposals with which to face the successive waves of COVID-19 infection, as well as other future pandemics. (shrink)

This article considers the claim that gender diverse minors and their families should not be able to consent to hormonal treatment for gender dysphoria. The claim refers particularly to hormonal treatment with so-called ‘blockers’, analogues that suspend temporarily pubertal development. We discuss particularly four reasons why consent may be deemed invalid in these cases: the decision is too complex; the decision-makers are too emotionally involved; the decision-makers are on a ‘conveyor belt’; the possibility of detransitioning. We examine each of these (...) reasons and we show that none of these stand up to scrutiny, and that some are based on a misunderstanding of the nature and purposes of this stage of treatment and of the circumstances in which it is usually prescribed. Moreover, accepting these claims at face value could have serious negative implications, not just for gender diverse youth, but for many other minors and families and in a much broader range of healthcare settings. (shrink)

There is much to learn from Durán and Jongsma’s paper.1 One particularly important insight concerns the relationship between epistemology and ethics in medical artificial intelligence. In clinical environments, the task of AI systems is to provide risk estimates or diagnostic decisions, which then need to be weighed by physicians. Hence, while the implementation of AI systems might give rise to ethical issues—for example, overtreatment, defensive medicine or paternalism2—the issue that lies at the heart is an epistemic problem: how can physicians (...) know whether to trust decisions made by AI systems? In this manner, various studies examining the interaction of AI systems and physicians have shown that without being able to evaluate their trustworthiness, especially novice physicians become over-reliant on algorithmic support—and ultimately are led astray by incorrect decisions.3–5 This leads to a second insight from the paper, namely that even if some AI system happens to be opaque, it is still not built on the moon. To assess its trustworthiness, AI developers or physicians have different sorts of higher order evidence at hand. Most importantly, …. (shrink)

Jeff Nisker describes his personal experience of a diagnosis of advanced prostate cancer and the kindnesses he received from friendly doctors. He claims that this narrative account supports the promotion of Prostate Specific Antigen screening for asymptomatic men and impugns statisticians, mistakenly thinking that their opposition to PSA screening derives from concerns about financial cost. The account inadvertently demonstrates the danger of over-reliance on a single ethical tool for critical analysis. In the first part of this response, we describe the (...) statistical evidence. The most reliable Cochrane meta-analyses have not shown that PSA screening saves lives overall. Moreover, the high false positive rate of PSA screening leads to overinvestigation which results in unnecessary anxiety and increased cases of unnecessary sepsis, urinary incontinence and sexual dysfunction. Then we describe how narrative ethics alone is an insufficient tool to make claims about policies, such as PSA screening, which have hidden harms. Although Nisker’s story-telling is compelling and evokes emotions, narrative ethics of this sort have an inherent bias against people who would be harmed by the counterfactual. Particular care must be taken to look for and consider those untellable stories. Ethicists who only consider narratives which are readily at hand risk harming those who are voiceless or protected by the status quo. PSA screening is the wrong tool to reduce prostate cancer deaths and narrative ethics is the wrong tool to appraise this policy. It is vital that the correct theoretical tools are applied to the medical and ethical questions under scrutiny. (shrink)

This paper addresses the just distribution of vaccines against the SARS-CoV-2 virus and sets forth an ethical framework that prioritises frontline and essential workers, people at high risk of severe disease or death, and people at high risk of infection. Section I makes the case that vaccine distribution should occur at a global level in order to accelerate development and fair, efficient vaccine allocation. Section II puts forth ethical values to guide vaccine distribution including helping people with the greatest need, (...) reducing health disparity, saving the most lives and promoting narrow social utility. It also responds to objections which claim that earlier years have more value than later years. Section III puts forth a practical ethical framework to aid decision-makers and compares it with alternatives. (shrink)

Ectogestation—that is, ‘artificial’ or extramammalian pregnancy—may soon be within technological reach. This confronts us with questions about the correct moral and legal attitude towards the subjects of this technology, which are called ‘gestatelings’. Colgrove argues that gestatelings are a kind of newborn, and consequently should have the same moral and legal protections as newborns. This paper responds that both claims are unsupported by his arguments, which equivocate on two understandings of the term ‘newborn’. Questions about the appropriate moral and legal (...) status of gestatelings are therefore left unanswered, but in the course of attempting to answer them, we are well advised to continue using the term gestateling. (shrink)

The COVID-19 pandemic put a large burden on many healthcare systems, causing fears about resource scarcity and triage. Several COVID-19 guidelines included age as an explicit factor and practices of both triage and ‘anticipatory triage’ likely limited access to hospital care for elderly patients, especially those in care homes. To ensure the legitimacy of triage guidelines, which affect the public, it is important to engage the public’s moral intuitions. Our study aimed to explore general public views in the UK on (...) the role of age, and related factors like frailty and quality of life, in triage during the COVID-19 pandemic. We held online deliberative workshops with members of the general public. Participants were guided through a deliberative process to maximise eliciting informed and considered preferences. Participants generally accepted the need for triage but strongly rejected ‘fair innings’ and ‘life projects’ principles as justifications for age-based allocation. They were also wary of the ‘maximise life-years’ principle, preferring to maximise the number of lives rather than life years saved. Although they did not arrive at a unified recommendation of one principle, a concern for three core principles and values eventually emerged: equality, efficiency and vulnerability. While these remain difficult to fully respect at once, they captured a considered, multifaceted consensus: utilitarian considerations of efficiency should be tempered with a concern for equality and vulnerability. This ‘triad’ of ethical principles may be a useful structure to guide ethical deliberation as societies negotiate the conflicting ethical demands of triage. No data are available. (shrink)

The authors put forward an interesting response to detractors of black box algorithms. According to the authors, what is of ethical relevance for medical artificial intelligence is not so much their transparency, but rather their reliability as a process capable of producing accurate and trustworthy results. The implications of this view are twofold. First, it is permissible to implement a black box algorithm in clinical settings, provided the algorithm’s epistemic authority is tempered by physician expertise and consideration of patient autonomy. (...) Second, physicians are not expected to possess exhaustive knowledge or understanding of the algorithmic computation by which they verify or augment their medical opinions. The potential of these algorithms to improve diagnostic and procedural accuracy alongside the quality of patient decision-making is undoubtedly a boon to modern medicine, but blind deference to them is neither feasible nor responsible, as several logistical and ethical quagmires noted by the authors still remain inherent in algorithmic software. I concur …. (shrink)

The COVID-19 pandemic has highlighted the risks that can be involved in healthcare work. In this paper, we explore the issue of staff safety in clinical work using the example of personal protective equipment in the COVID-19 crisis. We articulate some of the specific ethical challenges around PPE currently being faced by front-line clinicians, and develop an approach to staff safety that involves balancing duty to care and personal well-being. We describe each of these values, and present a decision-making framework (...) that integrates the two. The aim of the framework is to guide the process of balancing these two values when staff safety is at stake, by facilitating ethical reflection and/or decision-making that is systematic, specific and transparent. It provides a structure for individual reflection, collaborative staff discussion, and decision-making by those responsible for teams, departments and other groups of healthcare staff. Overall the framework guides the decision maker to characterise the degree of risk to staff, articulate feasible options for staff protection in that specific setting and identify the option that ensures any decrease in patient care is proportionate to the increase in staff well-being. It applies specifically to issues of PPE in COVID-19, and also has potential to assist decision makers in other situations involving protection of healthcare staff. There are no data in this work. (shrink)

Durán et al argue in ‘Who is afraid of black box algorithms? On the epistemological and ethical basis of trust in medical AI’1 that traditionally proposed solutions to make black box machine learning models in medicine less opaque and more transparent are, though necessary, ultimately not sufficient to establish their overall trustworthiness. This is because transparency procedures currently employed, such as the use of an interpretable predictor,2 cannot fully overcome the opacity of such models. Computational reliabilism, an alternate approach to (...) adjudicating trustworthiness that goes beyond transparency solutions, is argued to be a more promising approach. CR can bring the benefits of traditional process reliabilism in epistemology to bear on this problem of model trustworthiness. Durán et al ’s explicitly reliabilist epistemology to assess the trustworthiness of black box models is a timely addition to current transparency-focused approaches in the literature. Their delineation of the epistemic from the ethical also serves the debate by clarifying the nature of the different problems. However, their overall account underestimates the epistemic value of certain transparency-enabling approaches by conflating different types of opacity and also oversimplifies transparency-advocating arguments in the literature. First, it is unclear why Durán et al consider transparency approaches as insufficient to overcome epistemic opacity, if heiraccount of opacity is the traditional one from the machine learning literature: opacity stemming from the mismatch between mathematical optimisation in high dimensionality that is characteristic of machine learning and the demands of human-scale reasoning and styles of semantic interpretation.3 …. (shrink)

Risks and burdens in the study participation, as well as an adequate risk-benefit balance, are key concepts for the evaluation of clinical studies by research ethics committees. An adequate assessment and continuous monitoring to ensure compliance of risks and burdens in clinical trials have long been described as a central task in research ethics. However, there is currently no uniform and solid theoretical approach to risk assessment by RECs. Regulatory standards of research ethics such as the Declaration of Helsinki provide (...) only minimal guidance on how risk decisions are considered. Due to discrepancies in the existing literature and guidance documents, adequate risk assessment by RECs remains to be elusive. In this article, we address current definitions of risk and present our own concept of aggregate risk definition. Moreover, we highlight the concept of benefit, the standard of reasonableness with respect to ethics literature and different approaches of risk-benefit assessment. In order to present a comprehensive theoretical approach of risk assessment by RECs, further understanding of the definitions of risk may improve adequate decision-making tasks by RECs. To improve the process of risk assessment by RECs, a dynamic framework will be illustrated, showing step-by-step risk assessment functions. This approach may be a promising tool to ensure adequacy in risk assessment by RECs. (shrink)

Fears of black-box algorithms are multiplying. They are said to prevent accountability,1 to make it harder to detect bias2 and so on. Some fears concern the epistemology of black-box algorithms in medicine and the ethical implications of that epistemology. In ‘Who is afraid of black box algorithms? On the epistemological and ethical basis of trust in medical AI,’3 Juan Durán and Jongsma seek to allay such fears. While we find some of their arguments compelling, we still see reasons for fear. (...) ### The gap between epistemic and normative justification Duránand Jongsma’s main claim is that black-box algorithms can confer epistemic justification.They helpfully note the scope of this claim’s implications: its truth would not alone give the ethical stamp of approval to decisions that are informed by black-box algorithms. For example, a clinician may be epistemically justified—on the basis of a black-box algorithm’s diagnosis—in believing that a patient has cancer without thereby being normatively justified in administering chemotherapy. The epistemic justification can inform the decision, but further, moral considerations are needed to normatively justify it. This is a general point about the different natures of epistemic and normative justification. Yet, especially in the medical context, the distinction between epistemic and normative considerations are not always clear-cut. For example, an algorithm that looks like it plays a …. (shrink)

The medicalisation of pregnancy and childbirth has been encouraged by the continuing growth of technology that can be applied to the reproductive journey. Technology now has the potential to fully separate reproduction from the human body with the prospect of ectogenesis—the gestation of a fetus outside of the human body. This paper considers the issues that have been caused by the general medicalisation of pregnancy and childbirth and the impact that ectogenesis may have on these existing issues. The medicalisation of (...) pregnancy and childbirth is criticised for its impact on the relationship between doctors and pregnant women and the way in which doctors treat fetuses. It is argued that ectogenesis may cause more imbalance in the doctor and intended parent relationship and may result in an increased lack of clarity regarding a doctor’s duty to the fetus. This paper finds that extensive guidance and revised legislation will be necessary to minimise the impact of ectogenesis on the existing issues caused by the medicalisation of reproduction. (shrink)

Due to COVID-19’s strain on health systems across the globe, triage protocols determine how to allocate scarce medical resources with the worthy goal of maximising the number of lives saved. However, due to racial biases and long-standing health inequities, the common method of ranking patients based on impersonal numeric representations of their morbidity is associated with disproportionately pronounced racial disparities. In response, policymakers have issued statements of solidarity. However, translating support into responsive COVID-19 policy is rife with complexity. Triage does (...) not easily lend itself to race-based exceptions. Reordering triage queues based on an individual patient’s racial affiliation has been considered but may be divisive and difficult to implement. And while COVID-19 hospital policies may be presented as rigidly focused on saving the most lives, many make exceptions for those deemed worthy by policymakers such as front-line healthcare workers, older physicians, pregnant women and patients with disabilities. These exceptions demonstrate creativity and ingenuity—hallmarks of policymakers’ abilities to flexibly respond to urgent societal concerns—which should also be extended to patients of colour. This paper dismantles common arguments against the confrontation of racial inequity within COVID-19 triage protocols, highlights concerns related to existing proposals and proposes a new paradigm to increase equity when allocating scarce COVID-19 resources. (shrink)

In a recent article Joshua James Hatherley argues that, if physician-assisted suicide is morally permissible for patients suffering from somatic illnesses, it should be permissible for psychiatric patients as well. He argues that psychiatric disorders do not necessarily impair decision-making ability, that they are not necessarily treatable and that legalising PAS for psychiatric patients would not diminish research and therapeutic interest in psychiatric treatments or impair their recovery through loss of hope. However, by erasing distinction between somatic and psychiatric disorders (...) on those grounds, he also erases distinction between healthy adults and patients essentially implying that PAS should be available to all, for all reasons or, ultimately no reason. Furthermore, as psychiatric patients are much more likely to be a source of usable organs for transplantation, their broad inclusion would strengthen the link between PAS/euthanasia and organ donation, potentially undermining both as well as diminishing already declining general trust in medical authorities and professionals and public health authorities and activists. (shrink)

This paper describes how to ethically conduct research with Black populations at the intersection of COVID-19 and the Black Lives Matter movement. We highlight the issues of historical mistrust in the USA and how this may impact Black populations’ participation in COVID-19 vaccination trials. We provide recommendations for researchers to ethically engage Black populations in research considering the current context. Our recommendations include understanding the impact of ongoing trauma, acknowledging historical context, ensuring diverse research teams and engaging in open and (...) honest conversations with Black populations to better address their needs. The core of our recommendation is recognising the impact of trauma in our research and health care practices. (shrink)

In a recent Response published in the Journal of Medical Ethics,1 Buturovic provides two criticisms of my argument in ‘Is the exclusion of psychiatric patients from access to physician-assisted suicide discriminatory?’2 First, Buturovic argues that my argument effectively ‘erases the distinction between healthy adults and patients essentially implying that PAS [physician-assisted suicide] should be available to all, for all reasons or, ultimately no reason’. Second, Buturovic argues that opening the doors to medical assistance in dying for psychiatric patients could have (...) a number of undesirable implications. In particular, Buturovic highlights the potential negative implications for relations of trust in medicine—psychiatry in particular—along with potential effects on the rate of organ donation. I would here like to respond to these two criticisms. In short, my response to Buturovic’s first argument is that the slope is not nearly as slippery as Buturovic suggests. The reason for this is that the plausibility of Buturovic’s argument rests on a significant misinterpretation of my argument, along with an important equivocation in her own. Buturovic argues that, under the three criteria that I propose for the provision of MAID—sufficient decision-making capacity, demonstrated treatment resistance, and a lack of substantially negative implications for existing standards of psychiatric treatment and research—the provision of MAID for trivial reasons, even no reason at all, is justifiable. The main problem with this argument is that I propose no such positive criteria. My argument is that none of the three arguments addressed in my previous paper are sufficient to justify the exclusion of any and all psychiatric patients from access to MAID. I do not claim, in other words, that any individual …. (shrink)

Gestational surrogacy relies on a legal agreement between the surrogate and the intended parents to define the roles and responsibilities of the parties, including explicit consent by the surrogate to allow the physician to release all pregnancy-related medical information to the intended parents. In the event of surrogate misconduct, however, physicians may feel conflicted if the surrogate asks the physician to withhold information about potentially dangerous behaviour in pregnancy from the intended parents. While the American Society for Reproductive Medicine guidelines (...) may support disclosure over the objections of the surrogate, the authors argue that such disclosure is a violation of the surrogate’s rights and the physician’s ethical and professional duties. A surrogate’s confidentiality must be maintained as it is an essential element of the physician–patient relationship. (shrink)

In a recent Dutch euthanasia case, a woman underwent euthanasia on the basis of an advance directive, having first been sedated without her knowledge and then restrained by members of her family while the euthanasia was administered. This article considers some implications of the criminal court’s acquittal of the doctor who performed the euthanasia. Supporters of advance euthanasia directives have welcomed the judgement as providing a clarification of the law, especially with regard to the admissibility of contextual evidence in interpreting (...) advance euthanasia directives, but suggested that the law regarding advance euthanasia directives should be further relaxed to remove the requirement of current suffering and that an unfortunate consequence of the prosecution is that it is likely to deter doctors from performing euthanasia even in more straightforward cases. This article argues that the court’s endorsement of the use of contextual evidence is problematic, that the case for prioritising prior decisions over current interests has not been advanced by the discussion surrounding this case and that worries about the alleged deterrent effect are not well founded. (shrink)

Whether it is morally permissible to compel women to undergo a caesarean section is a topic of longstanding debate. Despite plenty of arguments against the moral permissibility of a forced caesarean section, the question keeps cropping up. This paper seeks to scrutinise a particular moral argument in favour of compulsion: the appeal to parental obligation. We present what we take to be a distillation of the basic form of this argument. We then argue that, in the absence of an exhaustive (...) theory of parental obligation, the question of whether a labouring woman is morally obliged to undergo emergency surgery—and especially the further question of it is morally permissible for third parties to compel this—cannot be answered via ready-made theory. We propose that the most viable option for settling both questions is by analogy. We follow earlier writers in presenting an analogous case—that of fathers being compelled to undergo non-consensual invasive surgery to save their children—but expand the analogy by considering objections that appeal to the ownership of the fetus. We offer two lines of response: the parthood view of pregnancy and chimaera dad. We argue that it is clear in the analogous case that compulsion cannot be justified. We also offer this analogy as a useful tool for assessing whether mothers have a moral duty to undergo caesarean sections, both in general and in particular cases, even if such a duty is insufficient to warrant compulsion. (shrink)

In their recent ‘The ethical case for non-directed postmortem sperm donation’, Hodson and Parker outline and defend the concept of voluntary non-directed postmortem sperm donation, the idea that men should be able to register their desire to donate their sperm after death for use by strangers since this would offer a potential means of increasing the quantity and heterogeneity of donor sperm. In this response, we raise some concerns about their proposal, focusing in particular on the fact that current methodologies (...) do not make for a reliable way of ensuring that sperm retrieved postmortem has a good chance of leading to conception, which is in turn likely to make potential recipients reluctant to use such sperm. These concerns add to the ethical doubts that attend aspects of the proposal, making the prospect of implementation of such a policy unlikely at best. (shrink)

It is with gratitude to Professor Wilkinson that I assemble these thoughts to the beautiful and haunting melodies of Schubert’s String Quartet No. 14. In the practice of paediatric palliative care, the wavering tension between the Maiden’s Cry and Death’s Response, that dance between hope and despair, unfolds daily in similarly beautiful and haunting ways. Schubert’s interpretation of the dialogue offers welcome connection across time and space. In that context, Wilkinson takes on the challenging question of what it means for (...) children to die well or to die poorly. Through examples of deaths that went poorly, he explores the many ways that death and dying can be bad. From the loss of valuable future life to the presence of pain and suffering, to the manner of dying being contrary to an individual’s wishes, to the negative impacts of a bad death on family members, caregivers and clinicians, each element that may contribute to a bad death is addressed. He then looks to the opposite of those bad elements to illuminate what makes a good death or dying process, and suggests a temporal consideration for evaluating a death’s relative value: ‘sometimes it would be better to die sooner rather than later, because longer existence would not in any meaningful way …. (shrink)

Bentham’s famous remark was a response to the assertation of natural rights that did not depend on law or some other foundation for their normative force.1 Whatever we make of that claim, it flags a problem for making and evaluating rights-based arguments in medical ethics. He wasn’t trying to say that rights are all meaningless, nor that we can readily do without them. Rather, it’s an objection to a particular way of asserting rights where they are taken to express free (...) standing claims that don’t require further defence or justification. Whether or not the rise of human rights in medical law has enriched the ability of the courts to deal with complex issues in a nuanced way is debatable, but there’s no doubting their prominence and unavoidability.2 For medical ethics, rights analysis requires paying heed to the kind of rights in play when arguing about ethics, as well as what’s distinctive about rights analysis. For many, rights operate as strong moral assertions intended to override other, less weighty, considerations and Ronald Dworkin claimed that we should view rights as a way of expressing particularly important claims that should constrain the state in its actions.3 Rights imply duties and focussing on a right's correlative duty can …. (shrink)

Dominic Wilkinson suggests that one of Schubert’s songs has relevance for neonatologists today. In the song, Schubert suggests that death sometimes comes as a friend. Wilkinson ponders whether the song has a message for doctors and parents, who sometimes struggle to figure out whether death is an enemy or a friend to a dying baby. Wilkinson reflects on the case of baby ‘Hal’, who was born with serious cardiomyopathy. Hal’s parents and doctors disagree about whether to withdraw life-support. Through his (...) recreations of their discussions, Wilkinson shows how hard it is to confront—and maybe even welcome—death for a child. While adults often frame their own decision to forego life-sustaining treatment with thoughts that they have lived a good life, death in childhood can seem unfair because it robs the child of their opportunity to live a good or completed life. Much as we try, we cannot really imagine what a critically ill neonate experiences or desires. We have very little insight into Hal’s interests or subjective experience. Without direct access to the child’s experience, it is impossible to know whether, like an adult, a child would choose to allow death to occur. We cannot verify the claim that the child’s death was good in the sense that it was good for them. Wilkinson proposes that a prolonged dying process …. (shrink)

Is it morally justifiable to force non-consenting pregnant women to submit to caesarean surgery to save their fetus in distress? Even though proponents and opponents largely agree on the interests at stake, such as the health and life of the fetus and the respect for bodily integrity and autonomy of pregnant women, they disagree on which moral weight to attach to these interests. This is why disagreements about the justifiability of forced caesareans tend to be pervasive and intractable. To sidestep (...) this deadlock, we will focus on conditions that give rise to the ‘caesarean dilemma’ in the first place, namely the conflict between inherent norms and values medical professionals are committed to by virtue of being a medical professional. Using the reflective equilibrium, we will test the opponents’ and proponents’ considered judgments about forced caesareans against the norms and values they—as medical professionals—are committed to and determine whether they are coherent. Subsequently we will identify the proponents’ incoherencies between the considered judgments and norms and values they are committed to and conclude that as long as these incoherencies are in place, forced caesareans are morally impermissible. (shrink)

In December, the National Data Guardian 1 for health and care in England, Dame Fiona Caldicott, published the outcomes of a public consultation about the Caldicott Principles and the role of Caldicott Guardians.1 The Caldicott Principles are good practice guidelines which have been used by health and social care organisations in the UK since 1997 to ensure that people’s data are kept safe and used in an ethical way.2 The role of the Caldicott Guardian is well-established in the UK. Caldicott (...) Guardians are senior people which support the upholding of the Caldicott Principles within organisations. In response to views expressed during the consultation the NDG has added an eighth Caldicott Principle to the existing seven and will use her statutory powers to issue guidance about the appointment of Caldicott Guardians for health and adult social care organisations. The new eighth Caldicott Principle is: ‘Inform patients and service users about how their confidential information is used’. It provides that: > A range of steps should be taken to ensure no surprises for patients and service users, so they can have clear expectations about how and why their confidential information is used, and what choices they have about this. These steps will vary depending on the use: as a minimum, this should include providing accessible, relevant and appropriate information - in some cases, greater engagement will be required. The NDG explains that the introduction of the new principle was prompted by consideration of the role that the legal concept of ‘reasonable expectations’ should play in shaping the circumstances under which health and care data may be legitimately shared. The NDG does not envisage that this principle will establish reasonable expectations as a legal basis in its own right …. (shrink)

In our paper ‘The ethical case for non-directed postmortem sperm donation’ we argued that it would be ethical for men to donate sperm after death for use by strangers. In their thoughtful response Fredrick and Ben Kroon lay out practical concerns regarding our proposal. They raise issues regarding the quality of sperm collected postmortem based on empirical studies. Second, they claim that concerns about quality would make women unlikely to use sperm collected after death. In this response we explore issues (...) of sperm quality in both living and dead donors. We consider whether there might be ways to ensure quality in both. Finally, we question whether quality should be a barrier to women choosing to use sperm donated after death. (shrink)

An argument against the use of non-medical egg freezing is that women should not use NMEF as it is an individualistic and morally problematic answer to the social problems that women face, for instance, in the labour market. Instead of allowing or expecting women to deal with these problems individually, we should address them by challenging the patriarchal structure of the labour market—for example, by securing equal pay and affordable childcare. In a recent article in Journal of Medical Ethics, I (...) argue that we should distinguish between different versions of this kind of reasoning and that all the versions discussed are implausible.1 In three separate comments following my article in the March 2021 issue of JME, Moen,2 Segers3 and Campo-Engelstein4 have supported and criticised some of my results. It is impossible, in such a short reply, to discuss all of their many relevant comments in detail, but in what follows I will reply to some of their criticism. Moen presents several interesting comments; let me try to deal with what I take to be the two most important ones. The first of these deals with some of my critical comments concerning …. (shrink)

Beneficent clinical usage of placebos has been a problem for the application of Kant’s deontology in medical ethics, which, in its strictest form, rejects deception universally. Some defenders of deontology have countered this by arguing placebos can be used by a physician without necessarily being deceptive. In this paper we argue that such a manipulation of Kant’s absolutism is not credible, and therefore, that we should look beyond deontology in our consideration of placebo usage in clinical practice. We conclude that (...) Kant’s deontology cannot be made compatible with placebo use in clinical practice due to the primacy it affords to the principle of autonomy. (shrink)

Recent advances in medical and information technologies, the availability of new types of medical data, the requirement of increasing numbers of study participants, as well as difficulties in recruitment and retention, all present serious problems for traditional models of specific and informed consent to medical research. However, these advances also enable novel ways to securely share and analyse data. This paper introduces one of these advances—blockchain technologies—and argues that they can be used to share medical data in a secure and (...) auditable fashion. In addition, some aspects of consent and data collection, as well as data access management and analysis, can be automated using blockchain-based smart contracts. This paper demonstrates how blockchain technologies can be used to further all three of the bioethical principles underlying consent requirements: the autonomy of patients, by giving them much greater control over their data; beneficence, by greatly facilitating medical research efficiency and by reducing biases and opportunities for errors; and justice, by enabling patients with rare or under-researched conditions to pseudonymously aggregate their data for analysis. Finally, we coin and describe the novel concept of prosent, by which we mean the blockchain-enabled ability of all stakeholders in the research process to pseudonymously and proactively consent to data release or exchange under specific conditions, such as trial completion. (shrink)

That which constitutes a ‘good death’, or dying well, has long been of interest to philosophers and clinicians alike. While difficult to define due to its deeply personal nature and dependency on spiritual and cultural beliefs and past experiences, Wilkinson1 has drawn parallels from art and music to consider key ethical components. Few in clinical practice would dispute that a ‘good death’ is one that does not rob the person of a valuable life, is aligned with the preferences of the (...) patient and/or their family, where comfort and solace is provided, distress to family and caregivers is minimised or even that dying is not prolonged. However, what is more contentious is how tensions within the principles of a ‘good death’ should be managed or prioritised. In the context of caring for critically ill babies and children, the tension often takes the form of prolonging the dying process through providing life-sustaining interventions to meet the needs of, and to lessen the longer term distress of, the bereaved family, who must live with the decisions that are made. Though often justifiable, such interventions may result in considerable moral distress within caregivers—particularly, as often the case, when interventions are perceived by some clinicians to be of greater benefit to the family than the patient. Some clinicians may have difficulty …. (shrink)

In their recent article, Porsdam Mann et al propose to share biomedical research data more widely, securely and efficiently using blockchain technologies. 1 They present compelling arguments for how the blockchain presents both a technological innovation, and a deontologically grounded policy innovation to traditional research consent. Their proposal can be read in conversation with a rich body of evidence to suggest current consent processes are problematic on at least one of tripartite bases in biomedical research: that it be fully informed. (...) This response attempts to further the author’s discussion of social justice discourse in, and of their proposed prosent model to enhance engagement among under-represented and vulnerable populations in research, specifically. Motivating this response is the view that advancing technological capabilities is no doubt necessary, but on its own insufficient to reinvigorate distributive, procedural and social justice as guiding principles for con/prosent processes. I offer three pros and cons to consider in effort to deepen the model’s commitments to social justice to historically marginalised groups in the biomedical research enterprise. (shrink)

The current empirical research and normative arguments on physician-assisted dying in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and (...) a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data—in this case narratives—relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician–bioethicist has to navigate different disciplinary fields and epistemological paradigms, especially since the ‘empirical turn’ in bioethics. (shrink)

In their three thoughtful commentaries on my essay, Prentice, Mahoney and Moore and Lantos reflect on the challenges that I set out: can we make sense of the notion of a good death, and can we use art and music to provide any insights into it?1–3 I was thinking about these questions again while reading this week of yet another UK legal dispute relating to life-sustaining treatment for a child. In January, the High Court heard the case of Pippa Knight, (...) a 5-year-old girl with profound brain injury who is in a persistent vegetative state, and has been ventilated in an intensive care unit for a protracted period.4 All of the experts giving evidence in the case agreed that Pippa lacks any ability to feel pain and that there is sadly no prospect of improvement. Her mother believed that, given the absence of pain, it would not be harmful and would be in Pippa’s best interests to attempt to transition her to long-term ventilation at home. Pippa’s treating doctors contended that it would be in her …. (shrink)

Ethical discussions about medical treatment for seriously ill babies or children often focus on the ‘value of life’ or on ‘quality of life’ and what that might mean. In this paper, I look at the other side of the coin—on the value of death, and on the quality of dying. In particular, I examine whether there is such a thing as a good way to die, for an infant or an adult, and what that means for medical care. To do (...) that, I call on philosophy and on personal experience. However, I will also make reference to art, poetry and music. That is partly because the topic of mortality has long been reflected on by artists as well as philosophers and ethicists. It is also because, as we will see, there may be some useful parallels to draw. (shrink)

As research involving gene editing continues to advance, we are headed in the direction of being able to modify the human germline. Should we reach a point where an argument can be made that the benefits of preventing unborn children and future generations from inheriting genetic conditions that cause tremendous suffering outweigh the risks associated with altering the human germline, the next step will be to design clinical trials using this technology in humans. These clinical trials will likely require careful (...) follow-up and monitoring of future generations born with altered genes. This paper addresses some of the ethical issues raised by intergenerational monitoring and sets out to show that these issues can be avoided with careful consideration and clinical trial design. (shrink)

According to Petersen, ‘the individualization argument against NMEF [nonmedical egg freezing]’ states: ‘it is morally wrong to let individuals use technology X [NMEF] – in order to try to handle a problem that is social in nature – if the use of X [NMEF] will somehow work against a social solution to a social problem P [gender inequality in the labor market]’. While there may be individuals making individualisation argument against NMEF, I do not read the scholars he discusses—Karey Harwood,1 (...) 2 Lynn Morgan, Janelle Taylor3 and Angel Petrapanagos4—as making this argument. These scholars agree with the premise of the individualisation argument that NMEF ‘is an individualistic and morally problematic solution to the social problems that women face’, but this does not mean that they agree with the conclusion ‘women should not use NMEF’. In fact, several admit that NMEF can be a good choice for some women; Petropanagos, for example, states ‘individual women may benefit from egg freezing to satisfy their reproductive desires’.4 In this commentary, I argue that Petersen incorrectly reduces these scholars’ positions to the individualisation argument by neglecting three pertinent factors: their feminist orientation, their multifaceted critiques of NMEF and how the rapidly advancing field of reproductive medicine informs their ethical analysis. While Petersen …. (shrink)

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019 Nature commentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example. In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field (...) of inquiry and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology. (shrink)

Medical ethicist, Guidry-Grimes has critically reviewed the concept of insight, voicing concerns that it lacks consensus as to its components and that it undermines patient perspectives. We respond by briefly summarising research over the last 30 years that she overlooks which has helped establish the clinical validity of the construct. This includes the adoption of standardised assessment tools—at least in research—and longitudinal and cross-sectional studies quantifying associations with psychopathological, clinical and cognitive measures. We also make the distinction between the current (...) standards for assessing decision-making capacity leading to, where appropriate, involuntary treatment in clinical and medico-legal settings which in most legislations do not include insight assessments, and anecdotal reports of the use and misuse of ‘lack of insight’ as a proxy for more comprehensive evaluation. We conclude by encouraging a broader view of insight akin to self-knowledge. (shrink)

My paper challenges an influential distinction between pain and suffering put forward by physician-ethicist, Eric Cassell. I argue that Cassell’s distinction is philosophically untenable because he contrasts suffering with an outdated theory of pain. In particular, Cassell focuses on one type of pain, the interpretation of nociception induced by noxious stimuli such as heat or sharp objects; yet since the late 1970s, pain scientists have rendered both nociception and noxious stimuli unnecessary for pain. I argue that this discrepancy between Cassell’s (...) distinction and pain science produces three philosophical problems for his distinction: first, he frames his distinction too generally, concentrating on only one type of pain to the neglect of others, such as neuropathy; second, it is possible that Cassell’s understanding of pain may include suffering; and third, Cassell gives examples of pain and suffering manifesting independently of each other, but it is possible that these cases may instead exemplify differences between nociceptive and non-nociceptive types of pain. Due to these problems, I conclude that Cassell’s distinction currently lacks a difference. I call for new efforts to articulate the differences, if any, between pain and suffering. (shrink)

The COVID-19 pandemic will likely recede only through development and distribution of an effective vaccine. Although there are many unknowns surrounding COVID-19 vaccine development, vaccine demand will likely outstrip early supply, making prospective planning for vaccine allocation critical for ensuring the ethical distribution of COVID-19 vaccines. Here, we propose three central goals for COVID-19 vaccination campaigns: to reduce morbidity and mortality, to minimise additional economic and societal burdens related to the pandemic and to narrow unjust health inequalities. We evaluate five (...) prioritisation approaches, assess their likely impact on advancing the three goals of vaccine allocation and identify open scientific questions that may alter their outcomes. We argue that no single prioritisation approach will advance all three goals. Instead, we propose a multipronged approach that considers the risk of serious COVID-19 illness, instrumental value and the risk of transmission, and is guided by future research on COVID-19-specific clinical and vaccine characteristics. While we focus this assessment on the USA, our analysis can inform allocation in other contexts. (shrink)

Withholding or withdrawing life-saving ventilators can become necessary when resources are insufficient. With rising cases in many countries, and likely further peaks in the coming colder seasons, ventilator triage guidance remains a central part of the COVID-19 policy response. The dominant model in ventilator triage guidelines prioritises the ethical principles of saving the most lives and saving the most life-years. We sought to ascertain to what extent this focus aligns, or conflicts, with the preferences of disadvantaged minority populations. We conducted (...) a bibliographical search of PubMed and Google Scholar and reviewed all ventilator rationing guidelines included in major recent systematic reviews, yielding 589 studies before screening. Post screening, we found six studies comprising a total of 10 591 participants, with 1247 from disadvantaged populations. Three studies reported findings stratified by race and age, two of which stratified by income. Studies included two to seven principles; all included ‘save the most lives’. Involvement of disadvantaged minority populations in eliciting preferences is very limited; few studies capture race and income. This is concerning, as despite relatively small numbers and framing effects there is an observable and plausible trend suggesting that disadvantaged groups worry that dominant principles reduce their chances of receiving a ventilator. To avoid compounding prior historical and structural disadvantage, policy makers need to engage more fully with these populations in designing and justifying ventilator rationing guidance and review their adequacy. Likewise, clinicians need to be aware that their implementation of dominant triage guidelines is viewed with higher levels of concern by minority populations. (shrink)

Recently, several genetic variants have been associated with increased or decreased risks of becoming infected and/or seriously ill with COVID-19—not only offering important potential medical benefits but also posing critical ethical questions. These genetic factors, some of which are associated with blood type, may account for variations in observed responses to COVID-19. Hence, assessments of these genetic differences and blood type could provide possible benefits in gauging patients’ risks of disease acquisition and prioritising allocation of interventions or vaccines, if supplies (...) are limited. The media has widely reported these findings, and people online are now discussing their blood type and its possible effects on their COVID-19 risks, but several ethical concerns arise. Individuals possessing genetic variants or blood types associated with lower risk may engage in ‘risk compensation’, erroneously assuming that they can protect themselves less, and hence less frequently wearing masks or washing hands. Given the ongoing COVID-19 pandemic, many physicians, hospitals, patients, policymakers, members of the public, testing companies and others may well consider these factors in making critical prevention/treatment decisions. Researchers, providers and others should thus begin to address these concerns. Increased awareness and education aimed at providers, patients, family members, public health officials, political leaders and the public-at-large are critical. Attitudinal research is vital to examine how providers, patients and the public understand these findings. Ethical frameworks and guidelines are needed, addressing whether such genetic information should be incorporated into decisions regarding allocation of scarce resources—including hospital and ICU beds, ventilators, medications and vaccines—and if so, how. (shrink)

In June 2020, Gilead agreed to provide the USA with 500 000 doses of remdesivir—an antiviral drug which at that time was percieved to show promise in reducing the recovery time for patients with COVID-19. This quantity represented Gilead’s then full production capacity for July and 90% of its capacity for August and September. Similar deals are evident around access to proposed vaccines for COVID-19, and such deals are only likely to increase. These attempts to secure preferential access to medicines (...) and vaccines, so-called vaccine/treatment nationalism, jeopardise supplies of life-saving treatments and vaccines available elsewhere, and jeopardise global equitable distribution of such vaccines/treatments more generally. Much of the focus to date has been on States’ role in negotiating such deals. However, such developments also demonstrate the power patent holders have in controlling access to life-saving healthcare, determining who obtains access first and at what price. This article argues that the extent of control currently given to patent holders for COVID-19 must be questioned. This article demonstrates that patents have significant implications for healthcare acting as private governance tools over patented inventions. It is only by greater probing of patent holders’ role in delivering access to medicines, diagnostics and vaccines for COVID-19 that equitable global equitable access can be achieved. (shrink)

Prostate cancer is one of the the most common cancers in men. A blood test called prostate-specific antigen has a potential to pick up this cancer very early and is used for screening of this disease. However, screening for prostate cancer is a matter of debate. Level 1 evidence from randomised controlled trials suggests a reduction in cancer-specific mortality from PCa screening. However, there could be an associated impact on quality of life due to a high proportion of overdiagnosis and (...) overtreatment as part of the screening. The US Preventive Services Task Force in 2012 recommended that PSA-based PCa screening should not to be offered at any age. However, considering the current evidence, USPSTF recently revised its recommendation to offer the PSA test to men aged 55–69 years with shared decision-making, in line with earlier guidelines from the American Cancer Society and the American Urological Association. A shared decision making is necessary since the PSA test could potentially harm an individual. However, the literature suggests that clinicians often neglect a discussion on this issue before ordering the test. This narrative discusses the main controversies regarding PCa screening including the PSA threshold for biopsy, the concept of overdiagnosis and overtreatment, the practical difficulties of active surveillance, the current level 1 evidence on the mortality benefit of screening, and the associated pitfalls. It offers a detailed discussion on the ethics involved in the PSA test and highlights the barriers to shared decision-making and possible solutions. (shrink)

Non-medical egg freezing is egg freezing for the sake of delaying parenthood. The label ‘non-medical’ can be confusing, since the extraction and freezing of eggs is undeniably a medical procedure. The point is that whereas ‘medical egg freezing’ is done in order to retain capacity to procreate despite a potentially threatening medical condition, ‘non-medical egg freezing’ is done for the sake of getting more time to find a suitable partner and/or to establish a career before embarking on parenthood. One type (...) of argument against NMEF is the individualisation argument, according to which NMEF is problematic in virtue of being an individual solution to a social problem. The underlying problem that ought to be targeted, it is argued, is the patriarchal structures in the labour market, which disprivilege women and make it excessively difficult to combine a work and parenthood. In “Arguments on thin ice”, Thomas Søbirk Petersen helpfully distinguishes between three variants of the individualisation argument: the non-address view, the distraction view and the further oppression view.1 Petersen argues, moreover, that none of these is convincing, and therefore that the rejection of NMEF is unwarranted. According to the non-address view, the reason NMEF ought to be rejected is that “it cannot address the social causes that make it so difficult to balance career and family”2 or that it “does not substantially alter the social structures that have constructed inequalities”3 between women and men. Petersen …. (shrink)

ObjectiveTo provide insights on emergent ethical tensions experienced by mental health practitioners during system re-organisation, which is sufficiently grounded in empirical data at the local level to inform policy on recovery at institutional and provincial levels.MethodEthnographic methods using narrative and critical phenomenological resources over 24 months.FindingsEveryday ethical tensions emerged at the confluence of different experiences of time, for example, how a context of increasing pressure to decrease patients’ length of stay at the hospital challenged efforts to listen to and advocate (...) for what mattered to patients and maintain the integrity of interventions. In this context, practitioners drew on clinical language and that of personal recovery to strategically ‘push back’, ‘play with’ or ‘take back’ time.DiscussionExamining everyday practices through ethnographic methods can illuminate the everyday ethical tensions that arise when mental health professionals and psychiatrists grapple with, often competing, goods. Critical phenomenological resources can help expand the structural considerations in empirical ethics, excavate underground practices and raise questions about the conceptual categories undergirding normative ethics. Experiencing-with practitioners in clinical contexts as they encounter and creatively resolve ethical tensions also propose a normative ethics of possibility, to help bridge the gap between empirical and normative ethics.ConclusionFocus on the relationship between policy, temporal practices and ethics suggests a reconfiguration of time and re-imagination of ethics in institutional settings in ways that can ultimately benefit patients and professionals alike. (shrink)

The aim of this article is to provide a systematic reconstruction and critique of what is taken to be a central ethical concern against the use of non-medical egg freezing. The concern can be captured in what we can call the individualisation argument. The argument states, very roughly, that women should not use NMEF as it is an individualistic and morally problematic solution to the social problems that women face, for instance, in the labour market. Instead of allowing or expecting (...) women to deal with them on an individual level, we should address them by challenging the patriarchal structures of the labour market—for example, by securing equal pay, or paid maternal leave, or ‘paid paternal [partner] leave and sick leave and affordable child care’. It will be made clear that there are several versions of this argument. The author will try to elaborate this claim, and it will be explained that the differences depend on the way in which bioethicists believe that individuals use of NMEF is morally problematic, compared with the alternative of securing social change for women in, say, the labour market. Finally, a critical discussion of three versions of the individualisation argument will follow, and it will be shown why all versions are on rather thin ice, or in other words, that they are implausible. (shrink)

Back in 2017, Moodley and Rennie published a paper in the Journal of Medical Ethics entitled ‘Penile transplantation as an appropriate response to botched traditional circumcisions in South Africa: an argument against.’1 As the title suggests, we took a critical view towards penile transplantation as a way of responding to the problem of young men in South Africa experiencing genital mutilation and amputation as a result of traditional circumcision practices. Our main conclusion was that prevention is key: social, cultural and (...) political strategies to prevent mutilations and amputations should be prioritised, rather than surgical solutions, particularly in low-resource communities. Van der Merwe, who led the surgical team for the first successful penile transplantation in Stellenbosch, South Africa, has responded to our views, and in what follows, we will distill and evaluate his main arguments. Cost and access to services : Van der Merwe states that our position is mostly based on costs, that is, that penile transplantation is expensive and it is unrealistic to think that young men in traditional communities will be able to avail themselves of such services. Against this, Van Der Merwe argues that the actual cost of penile transplantation can be favourably compared with another, more established medical intervention, that is, renal transplantation. Of course, cost comparisons are difficult with a new intervention when it is …. (shrink)

A clinical trial on mitochondrial replacement therapy is currently being conducted and if this technique proves effective, National Health Service England will fund MRT through the highly specialised services funding stream. This paper considers whether MRT should be publicly funded by the NHS. Given the current financial pressure the NHS is experiencing, a comprehensive discussion is essential. There is yet to be a thorough discussion on MRT funding, perhaps because this is a small-scale issue and presumed to be covered by (...) the HSS budget. However, the source of funding has not been confirmed due to the trial’s incompletion. Upon its completion, reasoned decisions need to be made over the allocation of scarce NHS resources. It is therefore important to consider the following arguments in advance. Three arguments given against NHS funding of MRT will be evaluated. The first argument against NHS funding examines the HSS overspending its budget in an underfunded NHS, suggesting funding must be carefully reprioritised. Second, the ethical issue of allowing public access to a technique with insufficient evidence behind it will be explored. The final point considers the option of privately funding MRT and how this would affect the treatment’s development. After illustrating the weaknesses of such arguments, it will be concluded that MRT should be funded by the NHS. (shrink)

I am happy to comment on T S Petersen’s1 examination of the ‘individualization argument against non-medical egg freezing ’. Petersen intervenes in the ethical discussion on egg freezing by critically reconsidering a specific type of argument against oocyte cryopreservation for reasons that are not directly related with medical issues. Petersen dissects the claim that such non-medical usage is ‘an individualistic and morally problematic solution to the social problems that women face, for instance, in the labour market’.1 Proponents of this argument (...) believe that egg freezing should not be used by women on an individual level to solve social problems but that one should instead address gendered inequalities on the labour market. Petersen asserts that this individualisation argument is unconvincing—although morally appealing—because of empirically and ethically flawed assumptions. I am enthusiastic—with some minor reservations—about his unravelment of the individualisation argument and his call for more empirical backing. As I understand his presentation, the argument that is the subject of Petersen’s analysis is a recurring argumentative trope in the broader realm of assisted reproduction ethics. For instance, the anticipated positive effect of artificial womb technology in terms of liberation from reproductive and related social inequalities is one of the most dominant ectogenesis …. (shrink)

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

Shortages of life-saving medical resources caused by COVID-19 have prompted hospitals, healthcare systems, and governmentsto develop crisis standards of care, including 'triage protocols' to potentially ration medical supplies during the public health emergency. At the same time, the pandemic has highlighted and exacerbated racial, ethnic, and socioeconomic health disparities that together constitute a form of structural racism. These disparities pose a critical ethical challenge in developing fair triage systems that will maximize lives saved without perpetuating systemic inequities. Here we review (...) alternatives to 'utilitarian' triage, including first-come first-served, egalitarian, and prioritarian systems of allocating scarce medical resources. We assess the comparative advantages and disadvantages of these allocation schemes. Ultimately, we argue that while triage protocols should not exacerbate disparities, they are not an adequate mechanism for redressing systemic health inequities. Entrenched health disparities must be addressed through broader social change. (shrink)

Olaf has a theory about advancing technologies being both our saviour and our doom. While we ought to avoid over-analysing claims of fictitious snowmen, we can pause to consider whether it is possible for an advancing technology to be both our saviour and our doom. I will maintain that it is. But for now, note how it is tempting to resolve the overlap by thinking about advancing technologies and individuals. In a possible reformulation of Olaf’s claim, advancing technology can be (...) one person’s saviour, but in being so, is another person’s doom. This reformulation is a type of an ‘individualisation argument’ against advancing technology. Specifically, it is the claim that while an individual’s use of technology may solve their iteration of a problem, it may also undermine a societal response to the broader problem. Peterson, in this edition’s Feature Article, has this type of ‘individualisation argument’ in his sights when he considers its application to non-medical egg freezing. That is, freezing an egg for social reasons rather than medical reasons. Peterson formulates the ‘individualisation argument’ in the following way1: > P1: It is morally wrong to let individuals use technology X—in order to try to handle a problem that is social in nature—if the use of X will somehow work against a social solution to a social problem P. > > P2: If individuals make use of a technology like …. (shrink)

Christian Munthe, David Fumagalli and Erik Malmqvist argue that well-known healthcare resource allocation principles, such as need, prognosis, equal treatment and cost-effectiveness, should be supplemented with a principle of sustainability.1 Employing such a principle would entail that the allocation of healthcare resources should take into account whether a specific allocation causes negative dynamics, which would limit the amount of resources available in the future. As examples of allocation decisions, which may have such negative dynamics, they mention those who cause a (...) lack of vaccines, anti-bioethics resistance and drug shortages. Thus, the overall thought is that we can spend and allocate healthcare resources in a certain way at t1, which means that we will have fewer resources available at a later point, t2. The authors argue that we should include a principle of sustainability to justify allocations, which avoids or diminishes the negative dynamics. The authors argue that existing principles cannot sufficiently include proper regard for how our current decisions affect future allocation decisions and, therefore, the people who need healthcare resources in the future. I am sympathetic to the developed argument and believe that the authors are correct that negative dynamics provide reasons to take our ability to meet future health needs …. (shrink)

Healthcare policies developed during the COVID-19 pandemic to safeguard community health have the potential to disadvantage women in three areas. First, protocols for deferral of elective surgery may assign a lower priority to important reproductive outcomes. Second, policies regarding the prevention and treatment of COVID-19 may not capture the complexity of the considerations related to pregnancy. Third, policies formulated to reduce infectious exposure inadvertently may increase disparities in maternal health outcomes and rates of violence towards women. In this commentary, we (...) outline these challenges unique to women’s healthcare in a pandemic, provide preliminary recommendations and identify areas for further exploration and refinement of policy. (shrink)

As the USA contends with another surge in COVID-19 cases, hospitals may soon need to answer the unresolved question of who lives and dies when ventilator demand exceeds supply. Although most triage policies in the USA have seemingly converged on the use of clinical need and benefit as primary criteria for prioritisation, significant differences exist between institutions in how to assign priority to patients with identical medical prognoses: the so-called ‘tie-breaker’ situations. In particular, one’s status as a frontline healthcare worker (...) has been a proposed criterion for prioritisation in the event of a tie. This article outlines two major grounds for reconsidering HCW prioritisation. The first recognises trust as an indispensable element of clinical care and mistrust as a hindrance to any public health strategy against the virus, thus raising concerns about the outward appearance of favouritism. The second considers the ways in which proponents of HCW prioritisation deviate from the very ‘ethics frameworks’ that often preface triage policies and serve to guide resource allocation—a rhetorical strategy that may undermine the very ethical foundations on which triage policies stand. By appealing to trust and consistency, we re-examine existing arguments in favour of HCW prioritisation and provide a more tenable justification for adjudicating on tie-breaker events during crisis standards of care. (shrink)

John Rawls’s ‘just savings’ principle is among the better-known attempts to outline how we should balance the claims of the present with the claims of the future generations on resources. A central element of Rawls’s approach involves endorsing a sufficientarian approach, where our central obligation is to ensure ‘the conditions needed to establish and to preserve a just basic structure’.1 This engaging paper by Christian Munthe, Davide Fumagalli and Erik Malmqvist does not explicitly mention Rawls’s work on this issue.2 Still, (...) there are parallels in their aim to generate a ‘sustainability principle’ for healthcare systems. The authors defend the broadening of our focus to the relations between rounds—particularly, how decisions in one period can affect our choice range in the next, whereas current principles for allocating healthcare resources operate within ‘allocation rounds’. Where Rawls is concerned about future generations, the authors’ concern is with future sets of patients. Our present decisions may generate system ‘dynamics’ which are either positive—where ‘more resources per health need’ become available—or negative—where decisions taken now leave us with less bang for our buck in the future. The paper’s important and compelling central claim is that we have an obligation …. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best (...) regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

In this issue of the Journal of Medical Ethics arguments are cogently made that sustainability and solidarity should be considered as core medical ethical principles, and that more explicit attention should be given to the complex context in which a decision is made. Munthe et al propose that sustainability should become an established principle for justifying healthcare resource allocation, and should be an explicit factor in procuring drugs and other resources.1 They argue that the current operational norms which guide decision (...) making can lead to what they call ‘negative dynamics’: the gradual depletion of resource available for healthcare. They illustrate this first by examining some well recognised examples of ‘positive dynamics’ which are considered in health policy: immunisation programmes are funded because lead to reduction or absence of disease in the population, thus freeing up resource for other uses; public health measures are offset by future cost reductions or income increases for healthcare via reduction of sick leave. ‘Negative dynamics’ however, are not routinely considered in operational decisions and they persuasively argue that they should be. Resource depletion has a negative effect on future cycles of healthcare. As an illustrative example, …. (shrink)

Maybe you only have 1000 units of some resource, but 10,000 people need the resource or would benefit from it. One question: why do you control the resource? Leave that aside for now. A second question: how should you allocate the resource? If you are a decision-maker in a health system, and if the resource has to do with medicine or public health, we are in the world of the ethics of scarce resource allocation decisions in healthcare. Munthe et al (...) 1 note that the ‘operational norms that guide actual decision making in this area tend to be similar across health systems’ and include principles concerning need, prognosis, equal treatment and cost-effectiveness. Even with just these principles, there are hard questions of how they ought to be specified, operationalised and balanced against each other when they conflict. They do not focus on this. Instead, they identify a concern: paying attention only to these principles in making allocation decisions may lead decision-makers to miss ‘negative dynamics’ that result from their decisions. They aim to rectify this by suggesting a ‘sustainability’ principle that would sit alongside these other ethical principles, serving as a side-constraint that rules out certain allocation choices or as a distinct reason to be weighed in the decision-making calculus. I agree that the downstream effects of our allocation decisions matter, …. (shrink)

In ‘Nothing to Be Ashamed of: Sex Robots for Older Adults with Disabilities,’1 I make the case that the unwanted absence of sex from a person’s life represents not just a loss of physical pleasure, but a loss of dignity. Since people aged 65 and over suffer disproportionately from disabilities that impair sexual functioning, I focus on this population. Drawing on an analysis of dignity developed at greater length elsewhere,2 I argue that sex robots can help older adults with disabilities (...) and that societies ought to take reasonable steps to make them available to this population. Unlike other assistive technologies, robots invite human-robot relationships and can form close connections with older adults.3 In response to the proposal, four commentators have introduced objections that I address below. Sorell4 argues that people who are young and able-bodied may wish for sex in their lives too and its absence may be a bigger concern for them than for older people. In reply, while my focus is older adults with disabilities that impair sexual function, I also acknowledge that loss of sexual function can occur at any age as …. (shrink)

Bioethical work on solidarity has yielded an array of divergent conceptions. But what do these accounts add to normative bioethics? What is solidarity’s distinctive social normative role? Prainsack and Buyx suggest that solidarity be understood as the ‘putty’ of justice. I argue here that the putty metaphor is deeply insightful and—when spelled out in detail—successfully explicates solidarity’s social normative function. Unfortunately, Prainsack and Buyx’s own account cannot play this role. I propose instead that the putty metaphor supports a conception of (...) solidarity as equity. This proposal enables us to answer whether and when we should act in solidarity, and with whom, while also capturing the putty metaphor and hence answering a basic question: what is solidarity for? (shrink)

We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ Trial is the first time a genetic point of care test has been applied in the acute neonatal setting; therefore, it is not surprising that questions have been raised which require debate, discussion and clarification. Parker and Wright misattribute several assumptions to the roundtable authors, which we would like to clarify here. Since they raise wider questions (...) about the PALOH trial itself, several of the roundtable discussants have made a joint response. (shrink)

We propose a principle of sustainability to complement established principles used for justifying healthcare resource allocation. We argue that the application of established principles of equal treatment, need, prognosis and cost-effectiveness gives rise to what we call negative dynamics: a gradual depletion of the value possible to generate through healthcare. These principles should therefore be complemented by a sustainability principle, making the prospect of negative dynamics a further factor to consider, and possibly outweigh considerations highlighted by the other principles. We (...) demonstrate how this principle may take different forms, and show that a commitment to sustainability is supported by considerations internal to the ethical principles already guiding healthcare resource allocation. We also consider two objections. The first of these, we argue, is either based on implausible assumptions or begs the question, whereas the second can be adequately accommodated by the principle we propose. (shrink)

On 8 October 2020, the British Medical Association published the results of its survey of BMA members on physician-assisted dying. With 28 986 respondents, this was one of the largest surveys of medical opinion on this topic ever carried out. This represents 19.35% of those who received an invitation to participate and the respondents were broadly representative of the BMA’s overall membership. The BMA was clear throughout this process that the results of the survey would not determine its policy. Its (...) current policy of opposition to all forms of physician-assisted dying would remain unless and until the Representative Body, which makes BMA policy, decided otherwise. The survey results would, however, inform a future debate on policy, currently scheduled to take place in June 2021. When asked what the BMA’s position should be on whether there should be a change in the law to allow doctors to prescribe drugs for an eligible patient to self-administer to end their own life, 40% said the BMA should be supportive, 33% opposed, 21% thought the BMA should be neutral and 6% were undecided. In relation to their own personal views, 50% were supportive, 39% opposed and 11% undecided. When asked whether they would be willing to participate in some way in the process, if it were to be legalised, 36% said yes, 45% said no and 19% were undecided. The same three questions were asked about a change in the law to allow doctors to administer drugs to end the life of an eligible patient. In response, 40% thought the BMA should oppose such a change, 30% thought the BMA should be supportive and 23% thought the BMA should be neutral; 7% of members responding were undecided on this question. In …. (shrink)

In this response article, we challenge a core assumption that lies at the centre of a round table discussion regarding the Pharmacogenetics to Avoid Loss of Hearing trial. The round table regards a genetic test for a variant that increases the risk of deafness if a carrier is given the antibiotic gentamicin. The idea is that rapid testing can identify neonates at risk, providing an opportunity to prevent giving an antibiotic that might cause deafness. We challenge the assumption that a (...) positive test unequivocally guides antibiotic choice because, aside from the risk of deafness, all antibiotics for neonatal sepsis are equivalent. We argue that this assumption is faulty and has particularly troubling moral consequences. We claim that giving an alternative to gentamicin is potentially providing inferior treatment and thereby may increase the risk of death. Parents and doctors are faced with a terrible choice as a result of positive point-of-care testing : give gold-standard treatment and risk deafness or give second line care and risk death. While we do not indicate an answer to this choice, what we do argue is that such a deep and difficult choice is one that may make parents wish genetic testing was never undertaken, and therefore, contra some authors in the round table, provides a reason to gain specific consent for POCT. (shrink)

Addressing distributive justice issues in health policy—ranging from the allocation of health system funding to the allocation of scarce COVID-19 interventions like intensive care unit beds and vaccines—involves the application of ethical principles. Should a principle of sustainability be among them? I suggest that while the value of temporal neutrality underlying such a principle is compelling, it is already implicit in the more basic principle of equal treatment. Munthe et al 1 imagine sustainability accompanying four other principles: need, prognosis, equal (...) treatment and cost-effectiveness. Some are spelled out, however, in ways that are ambiguous or incomplete. Start with need. They suggest that more resources should go to those with more need. But they do not explain what is meant by need, and conflicting definitions exist. Frances Kamm2 defines need as ‘how badly someone’s life will have gone if he is not helped’. But others define need-based distribution differently: for instance, distribution to those who are sickest right now or who will suffer harm without assistance3 4 or distribution that excludes consideration of non-medical factors.5 Kamm’s conception picks out an ethically compelling consideration, but one better described in terms of disadvantage rather than need. Two other principles are easier to understand. The prognosis principle tells us that the more an intervention promotes health, the more resource investment in that intervention is warranted. The equal treatment principle is the obverse of all other relevant principles: if two claims are equal with respect …. (shrink)

Mandatory vaccination, including for COVID-19, can be ethically justified if the threat to public health is grave, the confidence in safety and effectiveness is high, the expected utility of mandatory vaccination is greater than the alternatives, and the penalties or costs for non-compliance are proportionate. I describe an algorithm for justified mandatory vaccination. Penalties or costs could include withholding of benefits, imposition of fines, provision of community service or loss of freedoms. I argue that under conditions of risk or perceived (...) risk of a novel vaccination, a system of payment for risk in vaccination may be superior. I defend a payment model against various objections, including that it constitutes coercion and undermines solidarity. I argue that payment can be in cash or in kind, and opportunity for altruistic vaccinations can be preserved by offering people who have been vaccinated the opportunity to donate any cash payment back to the health service. (shrink)

In this article, we examine the inter-relationship between moral theory and the unpredictable and complex world of primary health care, where the values of patient and doctor, or groups of patients and doctors, may often clash. We introduce complexity science and its relevance to primary care; going on to explore how it can assist in understanding ethical decision making, as well as considering implications for clinical practice. Throughout the article, we showcase aspects and key concepts using examples and a case (...) study developed from our day-to-day experience working as clinical practitioners in primary care. (shrink)

One prominent view in recent literature on resource allocation is Persad, Emanuel and Wertheimer’s complete lives framework for the rationing of lifesaving healthcare interventions. CLF states that we should prioritise the needs of individuals who have had less opportunity to experience the events that characterise a complete life. Persad et al argue that their system is the product of a successful process of reflective equilibrium—a philosophical methodology whereby theories, principles and considered judgements are balanced with each other and revised until (...) we achieve an acceptable coherence between our various beliefs. Yet I argue that many of the principles and intuitions underpinning CLF conflict with each other, and that Persad et al have failed to achieve an acceptable coherence between them. I focus on three tensions in particular: the conflict between the youngest first principle and Persad et al’s investment refinement; the conflict between current medical need and a concern for lifetime equality; and the tension between adopting an objective measure of complete lives and accommodating for differences in life narratives. (shrink)

Munthe et al 1 argue for an asymmetry between positive and negative dynamics that justifies a new sustainability principle among the operational principles for ethical healthcare resource allocation. The purported asymmetry is that while positive dynamics are ‘taken into account in present applications of the operational principles…, negative dynamics are not’.1 Positive dynamics occur when allocations in the present lead to there being more healthcare resources per health need in the future, whereas negative dynamics occur when present allocations lead to (...) there being less future healthcare resources per health need.i Munthe et al 1 are correct that we have ethical reason to reduce negative dynamics—all other things being equal, having less future healthcare resources per health need is worse than having more. Furthermore, this ethical reason ought to be accounted for by operational principles. However, using current examples from the COVID-19 response, I argue that allocation policies guided by existing operational principles already take into account negative dynamics and thus obviate the need for a new sustainability principle. Nevertheless, Munthe et al 1 make a valuable contribution to the literature by opening up new lines of important research regarding the mitigation of allocation policies’ negative dynamics. As Munthe et al 1 cogently argue, existing healthcare allocation policies take positive dynamics into account. However, when they do so, they also often implicitly or …. (shrink)

The role and importance of solidarity for effective health provision is the subject of lengthy and heated debate which has been thrown into even sharper relief by the COVID-19 pandemic. In various ways, and by various authorities we have all been asked, even instructed, to engage in solidarity with one another in order to collectively respond to the current crisis. Under normal circumstances, individuals can engage in solidarity with their compatriots in the context of public health provision in a number (...) of ways, including paying taxes which fund welfare state initiatives, and avoiding others when ill. While there has been significant engagement in solidarity worldwide, there have also been high profile examples of refusals and failures to engage in solidarity, both by individual agents, and governments. In this paper I examine the consequence of these failures with reference to the actions of the current British government, which has failed to deliver an effective response to the crisis. This failure has effectively devolved responsibility for responding to the crisis to people who are simultaneously more vulnerable to infection, and less able to do anything about it. I argue that such responses represent mismanagement of a public health crisis, and a rejection of important democratic and egalitarian norms and values. (shrink)

Determining whether and/or how to enable older persons with disabilities to engage in sex raises several ethical considerations. With the goal of enabling the sexual functioning of older adults with disabilities, Jecker argues that sex robots could be used as a helpful tool. In her article, ‘Nothing to be Ashamed of: Sex Robots for Older Adults with Disabilities’, Jecker acknowledges the importance of sexual functioning and the fact that ageist assumptions incorrectly classify older persons as asexual. Additionally, older adults may (...) experience disabilities that negatively influence their sexual functioning, which is problematic since sex may be linked to the following capabilities: developing a meaningful life narrative; being healthy; experiencing bodily integrity; feeling and communicating emotions; affiliating with others and reflecting on and choosing a life plan.1 In accordance with Nussbaum’s capabilities approach,2 Jecker says that society has a duty to support these capabilities at a minimal threshold. And insofar as sexual functioning may be relevant to the capabilities for older adults with disabilities, then we need to respond accordingly. One way of achieving this aim is by providing access to sex robots. I agree that sex robots ought to be made available for older adults with disabilities. Nevertheless, the article inspires several areas for further exploration. As Jecker rightfully mentions, older adults are often incorrectly labelled as non-sexual. For instance, in their analysis of older individuals’ views on sex and quality of life, Gott …. (shrink)

Nancy Jecker’s essay Nothing to be Ashamed of: Sex Robots for Older Adults with Disabilities 1 presents a provocative application of the capabilities approach. Her ethical argument for providing access to sex robots for older adults with disabilities proceeds in five parts: 1. Older adults frequently suffer disabilities that impair sexual functioning. 2. The ability to function sexually is linked to central human capabilities, including: the ability to generate a personally meaningful life narrative; be physically, mentally and emotionally healthy; experience (...) bodily integrity; feel and express a range of human emotions; affiliate deeply with others; and reflect on and choose a plan for their life. 3. Society should take reasonable steps to support these human capabilities at a minimal threshold as part of a broader duty to respect human dignity. 4. Providing access to sex robots comprises part of reasonable efforts to support the six capabilities at a minimal threshold. 5. Therefore, society ought to make reasonable efforts to ensure access to sex robots for older adults with disabilities that impair sexual functioning. I am sympathetic to this line of reasoning, having proposed a series of legal reforms that would facilitate sexual expression among older adults with cognitive impairments as well.2 3 …. (shrink)

As a result of the COVID-19 global pandemic, paramedics in the UK face unprecedented challenges in the care of acutely unwell patients and their family members. This article will describe and discuss a new ethical dilemma faced by clinicians in the out-of-hospital environment during this time, namely the delivery of bad news to family members who are required to remain at home and self-isolate while the critically unwell patient is transported to hospital. I will discuss some failings of current practice (...) and reflect on some of the ethical and practical challenges confronting paramedics in these circumstances. I conclude by making three recommendations: first, that dedicated pastoral outreach teams ought to be set up during pandemics to assist family members of patients transported to hospital; second, I offer a framework for how bad news can be delivered during a lockdown in a less damaging way; and finally, that a new model of bad news delivery more suited for unplanned, time-pressured care should be developed. (shrink)

Much of modern ethics is built around the idea that we should respect one another’s autonomy. Here, “we” are typically imagined to be adult human beings of sound mind, where the soundness of our mind is measured against what we take to be the typical mental capacities of a neurodevelopmentally “normal” person—perhaps in their mid-thirties or forties. When deciding about what constitutes ethical sex, for example, our dominant models hold that ethical sex is whatever is consented to, while a lack (...) of consent makes sex wrong.1 Consent, in turn, is analysed in terms of autonomous decision-making: a “yes” or “no” that reflects the free and informed will of our idealised, sound-minded adult. Whether such models provide adequate normative guidance for ethical, much less good, sex between neurotypical human adults is an open question.2 3 When it comes to the ethics of sexual activity between humans and non-humans—robots, say—or between humans who don’t fit the rational stereotype, we hardly know where to begin.4–7 It is therefore heartening to see a number of papers in this issue tackling the difficult question how to respectfully facilitate or respond to the needs, desires, and decisions of people with different kinds or degrees of autonomy.8 For example, Sumytra Menon and colleagues9 explicitly discuss the notion of “borderline capacity” and argue, in the medical domain, for shared and supportive decision-making practices to “foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being.” Touching on a similar theme, Zahra Ladan 10 asks how we should conceive of liberty in the case of persons with certain inborn physical or mental limitations. Might it sometimes be necessary to …. (shrink)

The COVID-19 pandemic has placed an enormous burden on health systems, and guidelines have been developed to help healthcare practitioners when resource shortage imposes the choice on who to treat. However, little is known on the public perception of these guidelines and the underlying moral principles. Here, we assess on a sample of 1033 American citizens’ moral views and agreement with proposed guidelines. We find substantial heterogeneity in citizens’ moral principles, often not in line with the guidelines recommendations. As the (...) guidelines are likely to directly affect a considerable number of citizens, our results call for policy interventions to inform people on the ethical rationale behind physicians or triage committees decisions to avoid resentment and feelings of unfairness. (shrink)

Deep brain stimulation has been regarded as an efficient and safe treatment for Parkinson’s disease since being approved by the Food and Drug Administration in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS tends to increase (...) life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden. (shrink)

BackgroundIn the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.AimThis study explores the experiences with counselling that counselees receive from counsellors facilitated by Foundation De Einder.MethodsOpen coding and inductive analysis of in-depth interviews with 17 counselees.ResultsCounselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the (...) availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.ConclusionHaving obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life. (shrink)

Clinical trials emerged in rapid succession as the COVID-19 pandemic created an unprecedented need for life-saving therapies. Fair and equitable subject selection in clinical trials offering investigational therapies ought to be an urgent moral concern. Subject selection determines the distribution of risks and benefits, and impacts the applicability of the study results for the larger population. While Research Ethics Committees monitor fair subject selection within each trial, no standard oversight exists for subject selection across multiple trials for the same disease. (...) Drawing on the experience of multiple clinical trials at a single academic medical centre in the USA, we posit that concurrent COVID-19 trials are liable to unfair and inequitable subject selection on account of scientific uncertainty, lack of transparency, scarcity and, lastly, structural barriers to equity compounded by implicit bias. To address the critical gap in the current literature and international regulation, we propose new ethical guidelines for research design and conduct that bolsters fair and equitable subject selection. Although the proposed guidelines are tailored to the research design and protocol of concurrent trials in the COVID-19 pandemic, they may have broader relevance to single COVID-19 trials. (shrink)

This paper spotlights ways in which sexual capacities relate to central human capabilities, such as the ability to generate a personally meaningful story of one’s life; be physically, mentally and emotionally healthy; experience bodily integrity; affiliate and bond with others; feel and express a range of human emotions; and choose a plan of life. It sets forth a dignity-based argument for affording older people access to sex robots as part of reasonable efforts to support their central human capabilities at a (...) floor level. The argument develops stepwise: first, I dispel ageism and negative stereotypes about later-life sexuality, showing their deep historical roots in medicine and science; second, I set forth a positive argument, grounded in capability accounts of justice, for deploying sex robots for older people with disabilities; finally, after responding to objections, I conclude that sex robots are a reasonable way to support later-life sexuality for persons with disabilities. While often depicted as a product for younger, able-bodied people, this paper is a bid for reimagining sex robots as a product for older, disabled people. (shrink)

Doctors form an essential part of an effective response to the COVID-19 pandemic. We argue they have a duty to participate in pandemic response due to their special skills, but these skills vary between different doctors, and their duties are constrained by other competing rights. We conclude that while doctors should be encouraged to meet the demand for medical aid in the pandemic, those who make the sacrifices and increased efforts are owed reciprocal obligations in return. When reciprocal obligations are (...) not met, doctors are further justified in opting out of specific tasks, as long as this is proportionate to the unmet obligation. (shrink)

In P v Cheshire West, Lady Hale stated that an act that would deprive an able-bodied or able-minded person of their liberty would do the same to a mentally or physically disabled person. Throughout the judgement, there is no definition of what liberty is, which makes defining an act that would deprive a person of it difficult. Ideas of liberty are described in terms of political liberty within a society, the state of being free from external influence and individual autonomy. (...) This essay explores various philosophical ideas of liberty and what a legitimate constraint of liberty is. It will be argued that defining liberty in terms external influence from other human agents undermines the impact of natural inability on a person’s ability to fulfil their intrinsic desires—a true constraint of liberty is any which prohibits a person from acting in the way they desire. If liberty is not the same for all, it follows that a deprivation of liberty differs between different agents. Although the government must protect personal liberty, it is important to recognise that an act that may deprive an able-bodied or minded person of their liberty, may in fact promote the liberty of a disabled persons. It will be argued that acts that allow a disabled person to act out desires that they ordinarily would not be able to perform, do not deprive them of their liberty. (shrink)

Therapeutic privilege is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be (...) inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal. (shrink)

The availability of willing providers of medical assistance in dying in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at (...) the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions. (shrink)

Jecker’s paper focuses on the value of sex and sexuality in the lives of older people, and she argues that there is nothing wrong with the use of sex robots to realise that value. She concedes that sex robots marketed today are overwhelmingly designed for heterosexual males, and that their appearance corresponds to certain objectionable stereotypes of sexually attractive women, and of exciting sexual practices. Still, she says, sex robots do not have to be like that, and a less stereotype-ridden (...) design could take away the sexism, heterosexualism and ageism of current ones. I am sympathetic to these conclusions. But I believe that they are not general enough, and I want to take issue with the argumentative strategy that leads to them. The conclusions are not general enough, because disability or bad circumstantial luck can lead to the damaging absence of sex in the lives of people from many adult age groups, not just people in their 70s and 80s. Jecker’s paper starts with the case of couples whose sex life deteriorates with old age. But there are also many people, whether disabled or not, who fail to acquire a sex life, and who want one, sometimes desperately. They, too, have a problem that a suitable sex robot might help …. (shrink)

Nancy Jecker is right when she says that older persons ought not to be ashamed if they wish to remain sexually active in advanced old age. She offers a useful account of the role that sexuality plays in supporting key human capabilities. However, Jecker assumes an exaggerated account of what sex robots are likely to be able to offer for the foreseeable future when she suggests that we are obligated to make them available to older persons with disabilities. Moreover, whether (...) older persons should be ashamed to desire sex robots—or, more importantly, whether we should be ashamed at the thought that we should respond to the sexual needs of older persons by providing them with sex robots—turns on a range of arguments that Jecker fails to adequately consider. Jecker’s illusions about sex robots originate from a failure to recognise that what ‘sex’ robots facilitate is masturbation, not intercourse. Sex robots are sex toys, not partners. If there is only one person in the room, any sexual activity going on is masturbation, not sex. Jecker seems to think that the fact that ‘robots, like sex toys, can be used by couples’ means that they offer something other than ‘a form of masturbation’.1 However, that a sex toy—or a robot—can be used by couples does not make its use sex rather than masturbation—unless …. (shrink)

With Perry Hendricks, I recently outlined a strengthened version of the impairment argument for the immorality of abortion. Alex Gillham has argued that our use of Don Marquis’ deprivation of a ‘future-like ours’ account entails we were merely restating Marquis’ argument for the immorality of abortion. Here, I explain why SIA is more than just a reframing of Marquis.

Draft of forthcoming article in the Journal of Medical Ethics where I discuss ethical tension between LGBT testimony and testimonial trust of medical professionals.