The UK government has put lateral flow antigen tests at the forefront of its strategy to scale-up testing in the coronavirus pandemic. However, evidence from a pilot trial using an LFAT to identify asymptomatic infections in the community suggested that the test missed over half of the positive cases in the tested population. This raises the question of whether it can be ethical to use an inaccurate test to guide public health measures. We begin by explicating different dimensions of test (...) accuracy, and why they matter morally, before highlighting key data from the Liverpool pilot. We argue that the poor sensitivity of the LFAT in this pilot trial suggests that there are important limitations to what we can expect these tests to achieve. A test with low sensitivity will provide false-negative results, and in doing so generate the risk of false assurance and its attendant moral costs. However, we also suggest that the deployment of an insensitive but specific test could identify many asymptomatic carriers of the virus who are currently being missed under existing arrangements. Having outlined ways in which the costs of false reassurance could potentially be mitigated, we conclude that the use of an insensitive LFAT in mass testing may be ethical if it is used predominantly to identify positive cases, it is a cost-effective method of achieving that goal and if other public health tools can effectively prevent widespread false reassurance. (shrink)

Defining quality of life is a difficult task as it is a subjective and personal experience. However, for the elderly, this definition is necessary for making complicated healthcare-related decisions. Commonly these decisions compare independence against safety or longevity against comfort. These choices are often not made in isolation, but with the help of a healthcare team. When the patient’s concept of quality of life is miscommunicated, there is a risk of harm to the patient whose best interests are not well (...) understood. In order to bridge this gap in understanding and unite seniors with their caretakers as a cohesive team, we need to establish a definition of quality of life. In this paper, my personal experiences with the elderly will be analysed along with five essays on the topic of ageing. These sources provide clear evidence that quality of life for seniors is majorly determined by the ability to preserve one’s lifelong identity. When making difficult decisions in geriatric healthcare, this greater understanding of the determinants of life quality will allow treatments to best serve the elderly. Defining quality of life allows healthcare providers to shift the focus from minimising disability toward maximising ability. I believe this shift would provide seniors with better health outcomes and properly enhance the quality of their years. (shrink)

Care of the critically ill newborn includes support for the birth mother/parents with regular updates around the clinical condition of the baby, and involvement in discussions around complex decision-making issues. Discussions around continuation or discontinuation of life-sustaining are challenging even in the most straightforward of cases, but what happens when the birth mother is critically unwell? Such cases can lead to uncertainty around who should assume the parental role for these difficult discussions. In this round table discussion, we explore the (...) ethical, moral and legal uncertainties raised by coincident severe maternal and neonatal illness in the context of surrogacy. (shrink)

The COVID-19 pandemic will generate vexing ethical issues for the foreseeable future and many journals will be open to content that is relevant to our collective effort to meet this challenge. While the pandemic is clearly the critical issue of the moment, it’s important that other issues in medical ethics continue to be addressed as well. As can be seen in this issue, the Journal of Medical Ethics will uphold its commitment to publishing high quality papers on the full array (...) of medical ethics. At the same time, JME aims to be a premiere home for ground-breaking scholarship on the ethical issues raised by COVID-19. Toward this end, we have a number of papers that are freely available online and for which production has been fast-tracked.1–5 A challenge for authors who want to write about the pandemic is the rapidly evolving nature of the situation and the time it takes for journal content to be reviewed and published, even when fast-tracked. For that reason, all authors who would like to submit a paper on the pandemic can also submit a post to the JME blog prior to submitting a full paper to the journal. Those interested in writing for the JME blog should contact one of its editors, Hazem Zohny or Mike King. Over the last 3 weeks, 30 high-quality commentaries on the pandemic have been posted to the blog. These posts are circulated widely via the JME Twitter and Facebook feeds and have stimulated significant …. (shrink)

This paper briefly reviews highlights from decades of debates in medicine, law, bioethics, psychology and social research about children’s and parents’ views and consent to medical treatment and research. There appears to have been a rise and later a fall in respect for children’s views, illustrated among many examples by a recent book on the zone of parental discretion, which is reviewed. A return to greater respect for children’s views and consent is advocated.

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in (...) clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The conclusion (...) is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (shrink)

The US healthcare industry emits an estimated 479 million tonnes of carbon dioxide each year; nearly 8% of the country’s total emissions. When assessed by sector, hospital care, clinical services, medical structures, and pharmaceuticals are the top emitters. For 15 years, research has been dedicated to the medical structures and equipment that contribute to carbon emissions. More recently, hospital care and clinical services have been examined. However, the carbon of pharmaceuticals is understudied. This article will focus on the carbon emissions (...) of pharmaceuticals since they are consistently calculated to be among the top contributors to healthcare carbon and assess the factors that contribute to pharmaceutical carbon emissions. Specifically, overprescription, pharmaceutical waste, antibiotic resistance, routine prescriptions, non-adherence, drug dependency, lifestyle prescriptions, and drugs given due to a lack of preventive healthcare will be identified. Prescribing practices have environmental ramifications. Carbon reduction, when focused on pharmaceuticals, can lead to cleaner, more sustainable healthcare. (shrink)

Like many, I find the idea of relying on patient preference predictors in life-or-death cases ethically troubling. As part of his stimulating discussion, Sharadin1 diagnoses such unease as a worry that using PPPs disrespects patients’ autonomy, by treating their most intimate and significant desires as if they were caused by their demographic traits. I agree entirely with Sharadin’s ‘debunking’ response to this concern: we can use statistical correlations to predict others’ preferences without thereby assuming any causal claim. However, I suspect (...) that, for at least some of us, our unease about PPPs stems from a different kind of ‘autonomy’ concern. In this commentary, then, I will explore this concern, and show how it relates to Sharadin’s work. Very many of our preferences are caused, ultimately, by facts which are outside our control, such as our demographic features. However, I suggest that we can still act autonomously on the basis of such preferences, when they are preferences which we endorse. Imagine, for example, that Jane has grown up in a church-growing environment, which has shaped many of her preferences, …. (shrink)

The case states that a male same-sex couple entered into a surrogacy arrangement with an unrelated surrogate using donor sperm and the surrogate’s eggs. M is the legal mother pursuant to s33 of the Human Fertilisation and Embryology Act 2008. Though the facts tell us that there was no legally binding arrangement, this is in fact the position of the law: under s1A Surrogacy Arrangements Act, no surrogacy arrangements can ever be binding on the parties. It is not clear whether (...) the donor sperm is from one of the same-sex couple or not. If it was donor sperm and not from either intended father, this is not an arrangement that would be recognised in law, as one of the men must be genetically related to the child in order for them to obtain legal parenthood via a parental order, under s54 HFEA 2008. They could apply to adopt the child, although they may fall foul of adoption legislation1 if any money has moved between them and M and they do not fall within an exemption.2 In any event, an adoption cannot be achieved in time for them to obtain legal parenthood in a crisis situation. In the absence of a biological connection and the resulting legal parenthood, in order to obtain parental responsibility for the child to allow them to make decisions about Baby T’s care, the men would need to apply for leave to apply for a child arrangements order pursuant to s10 Children Act 1989. However, in the …. (shrink)

The patient preference predictor is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them with the treatments they would (...) have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice. There are no data in this work. (shrink)

The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting as a linchpin (...) bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2 Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3. (shrink)

New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...) are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation. (shrink)

In the case that triggered this round-table discussion there are three separate factors that contribute to moral uncertainty.1 First, the infant, baby T, is extremely premature with suspected brain injury and potentially poor prognosis. Second, the gestational mother is critically unwell herself and her outlook is guarded. Third, as linked commentaries make clear, the legal status of the intended parents is complex and ambiguous.2 3 Any of these factors on their own would be enough to generate ethical complexity and distress (...) in the neonatal intensive care unit. The combination of the three is likely to be highly stressful for all concerned.4 Commentaries on the case emphasise the complex legal questions and the potential need to involve the court. One resource that is not mentioned is the potential value of clinical ethics input in such a case. This is complementary to the need for legal advice. Its aim would be to help think through the specifically ethical, rather than legal questions. There are several things that I would aim to clarify if chairing a clinical ethics discussion on the case. First, it may be useful to draw on the concept of the …. (shrink)

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to engage in (...) any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (shrink)

Physicians anecdotally report inquiring about incarcerated patients’ crimes and their length of sentence, which has potential implications for the quality of care these patients receive. However, there is minimal research on how a physician’s awareness of their patient’s crimes/length of sentence impacts physician behaviours and attitudes. We performed regression modelling on a 27-question survey to analyse physician attitudes and behaviours towards incarcerated patients. We found that, although most physicians did not usually try to learn of their patients’ crimes, they often (...) became aware of them. We observed associations between awareness of a patient’s crime and poor physician disposition towards their patients and between physicians’ poor dispositions and lower reported quality of care. These associations suggest that awareness of a patient’s crime may reduce quality of care by negatively impacting physicians’ dispositions towards their patients. Future quantitative and qualitative studies, for example, involving physician interviews and direct patient outcome assessments, are needed to confirm these findings and further uncover and address hurdles incarcerated patients face in seeking medical care. (shrink)

Animal ethics committees typically focus on the welfare of animals used in experiments, neglecting the potential welfare impact of that animal use on the animal laboratory personnel. Some of this work, particularly the killing of animals, can impose significant psychological burdens that can diminish the well-being of laboratory animal personnel, as well as their capacity to care for animals. We propose that AECs, which regulate animal research in part on the basis of reducing harm, can and ought to require that (...) these harms to researchers are reduced as well. The paper starts by presenting evidence of these burdens and their harm, giving some examples showing how they may be mitigated. We then argue that AECs are well placed to account for these harms to personnel and ought to use their power to reduce their occurrence. We conclude by responding to four potential objections: that this problem should be addressed through health and safety administration, not research ethics administration; that the proposal is unjustifiably paternalistic; that these harms to laboratory animal personnel ought to occur, given their treatment of animals; and that mitigating them may lead to worse treatment of research animals. (shrink)