The last decade has seen a rise in big data approaches, including in the humanities, whereby large quantities of data are collected and analysed. In this paper, we discuss long-form audio recordings that result from individuals wearing a recording device for many hours. Linguists, psychologists and anthropologists can use them, for example, to study infants’ or adults’ linguistic behaviour. In the past, recorded individuals and communities have resided in high-income countries (HICs) almost exclusively. Recognising the need for better representation of (...) all cultures and linguistic experiences, researchers have more recently started to collect long-form audio recordings in low- and middle-income countries (LMICs). We aim to help researchers to collect, analyse and use these recordings ethically. To do so, we identify four main ethical challenges linked to research that relies on long-form recordings in LMICs. We provide recommendations to overcome these challenges. These considerations should be useful to researchers employing other big data techniques collected via wearables. (shrink)

The Unbeatable Light: Melammu and Its Biblical Parallels. By Shawn Zelig Aster. Alter Orient und Altes Testament, vol. 384. Münster: Ugarit-Verlag, 2012. Pp. xviii + 421. $114. [Distributed in North America by Eisenbrauns, Winona Lake, Ind.].

Parmi les déesses du monde mésopotamien, deux figures féminines se dégagent : les soeurs Ištar et Ereškigal. Ištar agit dans la sphère des relations amoureuses, et surtout de la bataille. Elle joue dans la guerre comme elle le ferait « avec une corde à sauter ». Ereškigal règne sur le monde des morts : elle est celle « qui n’a pas connu le jeu des jeunes filles ». Cette contribution s’appuie sur les documents écrits (hymnes, narrations mythologiques) en cunéiformes (sumérien (...) – akkadien et textes bilingues) des iie et ier millénaire av. n. è. Elle prend pour angle d’approche les relations conflictuelles entre ces grandes déesses pour mieux saisir leurs rapports respectifs au jeu : où et quand jouent-elles? À quoi et avec qui jouent-elles? Quelles sont les informations que l’on peut en tirer pour les femmes et jeunes filles humaines? Diverses problématiques sont abordées à la lumière des études de genre : celles des rapports intergénérationnels et interfamiliaux, de la définition des espaces privé-public, de la séduction et de l’érotisme. (shrink)

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

As an infant, my grandmother chewed my food for me because I was not capable of chewing on my own. As an adult, most African men still want to chew my food for me. So, how do African women consent to research when culturally they must surrender their autonomy? We join in solidarity and create our own collective autonomy. We know the rules of our patriarchal society and outwardly adhere to them. As an ethicist, I have developed a sense of (...) responsibility and solidarity with female research subjects; we collaborate in the full understanding of our lack of autonomy. (shrink)

The "morning morality effect"-the alleged phenomenon that people are more likely to act in unethical ways in the afternoon when they are tired and have less self-control than in the morning-may well be expected to influence prehospital anaesthesiologist manning mobile emergency care units (MECUs). The working conditions of these units routinely entail fatigue, hunger, sleep deprivation and other physical or emotional conditions that might make prehospital units predisposed to exhibit the "morning morality effect". We investigated whether this is in fact (...) the case by looking at the distribution of patient transports to hospital with and without physician escort late at night at the end of the shift as a surrogate marker for changing thresholds in ethical behaviour. All missions over a period of 11 years in the MECU in Odense were reviewed. Physician-escorted transports to hospital were compared with non-physician-escorted transports during daytime, evening, and night-time (which correlates with time on the 24 h shifts). In total, 26,883 patients were transported to hospital following treatment by the MECU. Of these, 27.4% (26.9%-27.9%) were escorted to the hospital. The ratio of patient transports to hospital with and without physician escort during the three periods of the day did not differ (p = 1.00). We found no evidence of changes in admission patterns over the day. Thus, no evidence of the expected "morning morality effect" could be found in a prehospital physician-manned emergency care unit. (shrink)

BackgroundWith the emergence of Brain Computer Interfaces, clinicians have been facing a new group of patients with severe acquired brain injury who are unable to show any behavioral sign of consciousness but respond to active neuroimaging or electrophysiological paradigms. However, even though well documented, there is still no consensus regarding the nomenclature for this clinical entity.ObjectivesThis systematic review aims to 1) identify the terms used to indicate the presence of this entity through the years, and 2) promote an informed discussion (...) regarding the rationale for these names and the best candidates to name this fascinating disorder.MethodsThe Disorders of Consciousness Special Interest Group of the International Brain Injury Association launched a search on Pubmed and Google scholar following PRISMA guidelines to collect peer-reviewed articles and reviews on human adults published in English between 2006 and 2021.ResultsThe search launched in January 2021 identified 4,089 potentially relevant titles. After screening, 1,126 abstracts were found relevant. Finally, 161 manuscripts were included in our analyses. Only 58% of the manuscripts used a specific name to discuss this clinical entity, among which 32% used several names interchangeably throughout the text. We found 25 different names given to this entity. The five following names were the ones the most frequently used: covert awareness, cognitive motor dissociation, functional locked-in, non-behavioral MCS and higher-order cortex motor dissociation.ConclusionSince 2006, there has been no agreement regarding the taxonomy to use for unresponsive patients who are able to respond to active neuroimaging or electrophysiological paradigms. Developing a standard taxonomy is an important goal for future research studies and clinical translation. We recommend a Delphi study in order to build such a consensus. (shrink)

L'ouvrage publié réunit les actes d'une journée d'étude consacrée à L'imprévu et le droit, souhaitée par les doctorants et organisée par l'Ecole doctorale de droit comparé de l'Université Paris 1 Panthéon-Sorbonne. Le sujet est immédiatement apparu très riche. Si le terme d'imprévu n'est pas essentiellement juridique, il fait écho à des critères du droit tels que la prévisibilité d'une situation ou d'un texte, ou l'imprévisibilité d'un événement comme cause exonératoire de responsabilité. Il renvoie plus généralement à l'exigence de sécurité juridique (...) qui s'opposerait à l'imprévu juridique. En outre le contexte était des plus propices, quelle que soit la discipline concernée, droit public, droit privé et/ou droit pénal. L'imprévu est entendu comme tout ce qui n'a pas été prévu, tout ce qui arrive lorsqu'on ne s'y attend pas. Prévoir, c'est admettre comme probable. La question de l'imprévu confronté au droit est intéressante car les deux concepts semblent antinomiques. Le droit apparaît en effet comme quelque chose de figé, permettant de régler par anticipation les comportements humains. Il doit permettre à chacun de régler sa conduite puisque nul n'est censé ignorer la loi. Le droit doit donc être à la fois connu et prévisible dans ses effets même s'il n'en est pas toujours ainsi. La notion d'imprévu semble rencontrer le droit de deux manières. D'une part, il existe la norme imprévue : la norme nouvelle, la coutume en formation ou l'interprétation surprenante. Se posent alors les questions de la prévisibilité du droit, et corrélativement celle de la sécurité juridique. D'autre part, il y a le fait imprévu. La norme doit se saisir de comportements humains ou de situations de fait qui n'avaient pas été anticipés. L'appréhension du risque et de la survenance d'événements inattendus par des règles de droit préexistantes devient alors un enjeu essentiel. (shrink)

Hans Christian Andersen is a cultural icon, and his fairy tales are famous around the world. But despite the positive ring to this description, his status as a canonized author poses a challenge when he is passed on to new generations of readers. In this article, we show examples of how this challenge reveals itself in Danish primary school teaching where Andersen is an obligatory figure in the subject Danish where he is frequently framed as a national romantic author of (...) morally unambiguous texts. Taking the current use of “The Ugly Duckling” (1844) in primary school teaching materials as a point of departure, we aim to show Andersen’s potential to be presented as an element in primary school teaching that draws on dialogic inquiries rooted in Philosophy with Children. Philosophical inquiries are characterized by an open mindset that incite teachers as well as school children to engage with the rich ethical themes and literary qualities of Andersen’s fairy tales. We conclude the article with our own inquiry manual to “The Ugly Duckling” to illustrate a way to overcome the current hegemonic framing of Andersen and reopen his fairy tale for future discussions and interpretations. (shrink)

This article reviews the phenomena of disordered discourse often manifested in schizophrenia. It argues that the Structure Building Framework, a model of the general cognitive processes and mechanisms underlying discourse, can be used to account for these phenomena. According to the Structure Building Framework, the goal of comprehension is to build coherent mental representations or structures. Building a mental structure involves several component subprocesses: laying a foundation, mapping relevant information onto that foundation, and shifting to initiate a new substructure. Building (...) a mental structure also involves at least two general cognitive mechanisms: enhancement of relevant activation and suppression of irrelevant or inappropriate activation. We suggest that schizophrenics who exhibit verbose disordered discourse have inefficient suppression mechanisms, are impaired in laying a foundation, and tend to shift too often. We also speculate that schizophrenics who exhibit impoverished disordered discourse have inefficient enhancement mechanisms and are impaired with the cognitive process of mapping. (shrink)

In vertebrates, single cell analyses of replication timing patterns brought to light a very well controlled program suggesting a tight regulation on initiation sites. Mapping of replication origins with different methods has revealed discrete preferential sites, enriched in promoters and potential G‐quadruplex motifs, which can aggregate into initiation zones spanning several tens of kilobases (kb). Another characteristic of replication origins is a nucleosome‐free region (NFR). A modified yeast strain containing a humanized origin recognition complex (ORC) fires new origins at NFRs (...) revealing their regulatory role. In cooperation with NFRs, the histone variant H2A.Z facilitates ORC loading through di‐methylation of lysine 20 of histone H4. Recent studies using genome editing methods show that efficient initiation sites associated with transcriptional activity can synergize over several tens of kb by establishing physical contacts and lead to the formation of early domains of DNA replication demonstrating a co‐regulation between replication initiation and transcription. (shrink)

In their article, “Ethical Issues in Using Behavior Contracts to Manage the “Difficult’ Patient and Family,” Autumn Fiester and Chase Yuan (2023) identify six ethical concerns regarding the specifi...

This article presents a critique of an article previously featured in Nursing Philosophy (10: 26–33) by Ursula Naue and Thilo Kroll, who suggested that people living with dementia are assigned a negative status upon receipt of a diagnosis, holding the identity of the ‘demented other’. Specifically, in this critique, we suggest that unwitting use of the adjective ‘demented’ to define a person living with the condition is ill-informed and runs a risk of defining people through negative (self-)attributes, which has a (...) deleterious impact upon that person's social and relational personae. Moreover, use of the locution ‘demented’ reinforces a divide between the ‘demented’ (them) and the ‘healthy others’ (us). Social constructionist theory, malignant positioning and viewing people with dementia as semiotic subjects are the philosophical pillars through which we construct the main arguments of the critique. The article concludes with the voice of one of the authors, a younger person with dementia, asking for language in dementia care to be carefully reconsidered and reframed and for the recognition of the diagnosed person's agency in the conduct of their day-to-day lives. (shrink)

Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally ill patients. Methods A qualitative interview (...) study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular. (shrink)

This paper enquires into the politics of real-time in online media. It suggests that real-time cannot be accounted for as a universal temporal frame in which events happen, but explores the making of real-time from a device perspective focusing on the temporalities of platforms. Based on an empirical study exploring the pace at which various online media produce new content, we trace the different rhythms, patterns or tempos created by the interplay of devices, users’ web activities and issues. What emerges (...) are distinct forms of ‘realtimeness’ which are not external from but specific to devices, organized through socio-technical arrangements and practices of use. Realtimeness thus unflattens more general accounts of the real-time web and research, and draws attention to the agencies built into specific platform temporalities and the political economies of making real-time. (shrink)

Whether unconscious stimuli can modulate the preparation of a cognitive task is still controversial. Using a backward masking paradigm, we investigated whether the modulation could be observed even if the prime was made unconscious in 100% of the trials. In two behavioral experiments, subjects were instructed to initiate a phonological or semantic task on an upcoming word, following an explicit instruction and an unconscious prime. When the SOA between prime and instruction was sufficiently long , primes congruent with the task (...) set instruction led to speedier responses than incongruent primes. In the other condition , no task set priming was observed. Repetition priming had the opposite tendency, suggesting the observed task set facilitation cannot be ascribed solely to perceptual repetition priming. Our results therefore confirm that unconscious information can modulate cognitive control for currently active task sets, providing sufficient time is available before the conscious decision. (shrink)

In Denmark, teaching the famous fairy tales of Hans Christian Andersen poses a challenge in primary education because cultural heritage status and oversimplified readings make it difficult to engage students in authentic readings. A strategy could be to use philosophical dialogues from the tradition of philosophy with children because this is a student-centred approach to teaching where students explore questions and ideas together, and where the teacher assumes the role not as authority, but as facilitator of the dialogue. This kind (...) of dialogic teaching has been encouraged as especially suitable for literary education where teachers aim to engage students in reading the literature with an open mind. However, this article presents a case study that gives reason for caution. It analyses materials for philosophical dialogues on Hans Christian Andersen’s fairy tales and concludes that despite the dialogic ideals, the teaching design caves in to the weight of the cultural and historical impact of Hans Christian Andersen and his work. (shrink)

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions. (...) A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom -based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to. (shrink)

The office of the United nations high commissioner for human rights (OHCHR): serious human rights abuses against the Uyghur people in Xinjiang, China Very close to midnight on the 31 August 2022, minutes before Michelle Bachelet’s four-year term as UN Commissioner for Human Rights came to an end, her office finally succeeded in publishing her long-delayed report into serious human rights violations in the Xinjiang province in China. According to The Guardian newspaper, papers leaked in July of the same year (...) showed sustained efforts by China to prevent the report’s release, and Bachelet has subsequently spoken of the intense pressure she was put under by the Chinese to prevent the report’s publication. 1 The report is sobering. 2 It is explicit that the Peoples’ Republic of China (PRC) has committed systematic violations of fundamental human rights against the Uyghur and other Turkic Muslim minorities in Xinjiang... (shrink)

Thomas Berry presents his vision of cosmology and the relationships in creation. Responses from Donald Senior, Gregory Baum, Margaret Brennan, Stephen Dunn, James Farris, and Brian Swimme round out the insights and create magnetic reading.

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion‐oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, (...) living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É‐LABO, we approach challenges as learning opportunities to ask not only “how” questions but also “why” questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics. (shrink)

Legal battles continue in the UK over the Government’s plans to transport asylum seekers arriving on British shores to Rwanda in East Africa. Originally announced as a system for ‘processing’ asylum seekers, the Government has subsequently made it clear that there would not be an option for asylum seekers to return to the UK. The arrangement forms part of a deal between the UK and Rwanda, with the UK promising to invest £120 m in economic growth and development in Rwanda, (...) along with financing the cost of the ‘offshored’ asylum operation.1 The Government states that the policy is designed to break the business model of people traffickers involved in facilitating hazardous trips across the Channel in small, overcrowded and unseaworthy craft, leading to multiple drownings. Critics argue that the policy will do nothing to stop desperate people from seeking refuge in the UK, that transferring already traumatised people to Rwanda – which has been criticised for its human rights record – is inhumane and potentially outwith international law. Medical bodies, including the BMA, along with refugee organisations have expressed serious concerns about the health impact of such a system of ‘offshoring’. An equivalent system in Australia has been notorious for the devastating health impacts on those ‘offshored’ to the Pacific islands of Manus and Naura. Unusually in the UK the offshoring proposals have been greeted by unanimous condemnation by the Church of England. The lawfulness of the process is also subject to question. On the 14 July, a plane carrying a small number of asylum seekers to Rwanda was halted shortly before take-off following an intervention by the European Court of Human Rights. The ECtHR, part of the Council of Europe, of which the UK is still a member, said an Iraqi man known as KN faced ‘a real …. (shrink)

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

Background The first COVID-19 wave started in February 2020 in France. The influx of patients requiring emergency care and high-level technicity led healthcare professionals to fear saturation of available care. In that context, the multidisciplinary Ethics- Support Cell (EST) was created to help medical teams consider the decisions that could potentially be sources of ethical dilemmas. Objectives The primary objective was to prospectively collect information on requests for EST assistance from 23 March to 9 May 2020. The secondary aim was (...) to describe the Cell’s functions during that period. Research design This observational, real-time study of requests for Cell consultations concerned ethical dilemmas arising during a public health crisis. The EST created a grid to collect relevant information (clinical, patient’s/designated representative’s preferences and ethical principles strained by the situation), thereby assuring that each EST asked the same questions, in the same order. Participants and research context Only our university hospital’s clinicians could request EST intervention. Ethical considerations The hospital Research Ethics Committee approved this study (no. CER-2020-107). The patient, his/her family, or designated representative was informed of this ethics consultation and most met with EST members, which enabled them to express their preferences and/or opposition. Findings/results 33 requests (patients’ mean age: 80.8 years; 29 had COVID-19: 24 with dyspnea, 30 with comorbidities). 17 Emergency Department solicitations concerned ICU admission, without reference to resource constraints; others addressed therapeutic proportionality dilemmas. Discussion Intervention-request motives concerned limited resources and treatment intensity. Management revolved around three axes: the treatment option most appropriate for the patient, the feasibility of implementation, and dignified care for the patient. Conclusions COVID-19 crisis forced hospitals to envisage prioritization of ICU access. Established decision-making criteria and protocols do not enable healthcare professionals to escape ethical dilemmas. That acknowledgement highlights ethical risks, enhances the added-value of nursing and encourages all players to be vigilant to pursue collective deliberations to achieve clear and transparent decisions. (shrink)

In June 2021, the BMA published its report on moral distress and moral injury in UK doctors.1 The report includes definitions of the terms ‘moral distress’ and ‘moral injury’ as well as a summary of how the concepts have developed over time. There is also an analysis of the BMA’s pan-profession survey of moral distress and moral injury of doctors in the UK, the first of its kind. The impact of COVID-19 and recommendations for tackling moral distress also feature. Many (...) may be unfamiliar with the concepts of ‘moral distress’ and ‘moral injury’. These terms are relatively new, and debate is ongoing in academic circles on the best way to understand them.2 Some use the terms interchangeably. The BMA defines moral distress as the psychological unease generated where professionals identify an ethically correct action to take but are constrained in their ability to take that action. Even without an understanding of the morally correct action, moral distress can arise from the sense of a moral transgression. More simply, it is the feeling of unease stemming from situations where institutionally required behaviour does not align with moral principles. This can be as a result of a lack of power or agency, or structural limitations, such as insufficient staff, resources, training or time. The individual suffering from moral distress need not be the one who has acted or failed to act; moral distress can be caused by witnessing moral transgressions by others. Moral injury can arise where sustained moral distress leads to impaired function or longer-term psychological harm. Moral injury can produce profound guilt and shame, and in some cases also a sense of betrayal, anger and profound ‘moral disorientation’. It has also been linked to severe mental health issues. There is increasing recognition across the UK of the problem …. (shrink)

The ethical conduct of research rests largely on researchers, and as such, an understanding of how they perceive and enact their role in research is paramount. However, the literature around ethics and research mostly focuses on researchers’ perception of Research Ethics Boards roles and functions. To fill that gap, we analyzed the perceptions of researchers, REB members, and influential parties about researchers’ role in the ethical conduct of research through discourse analysis. Three discourses emerged: researchers as reflective practitioners, protectors of (...) participants, and technicians. Understanding the commonalities and differences among the discourses may foster a shared and compelling institutional research culture. (shrink)

On 7 April 2022 – coinciding with World Health Day – the British Medical Association launched its new report, Health and human rights in the new world order.1 Written during the global upheaval triggered by the COVID-19 pandemic, and published just weeks after the Russian invasion of Ukraine, the report responds to a range of emerging and intensifying threats to health-related human rights globally. As the report establishes, human rights in health and healthcare matter because human suffering, and its relief, (...) are fundamental moral issues. As relief of human suffering is the primary purpose of medicine, it follows that doctors and other health professionals are often active in times of human challenge and extremity. During conflict, humanitarian crises, and, as we have so recently seen, global public health emergencies, health professionals are essential to the response. But these crises – and the response to them – can put fundamental human rights and interests under pressure. The Russian invasion of Ukraine has seen sustained indiscriminate shelling of civilian infrastructure. Whether health facilities were directly targeted is moot – the indiscriminate nature of the assault means they will inevitably be hit. Not only is this a violation of the Geneva Conventions, it undermines fundamental human rights, not least of which the right to health. Destroying health infrastructure drives further suffering and delays post-conflict recovery. Public heath emergencies can rightly require draconian measures – social distancing, enforced isolation, location tracking, economic shutdown. Although we saw their necessity during the COVID-19 outbreak, concerns were raised about disproportionate restrictions on basic rights, including rights to privacy and liberty. Human Rights Watch drew attention to the way governments unlawfully exploited COVID-19 to crack down on fundamental rights.2 Although conflicts and public health emergencies are not new, the report also tracks a number of …. (shrink)

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

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

In previous Ethics briefings 1 we have highlighted the developments in the case of Bell & Another v the Tavistock and Portman NHS Foundation Trust. The case concerned a judicial review of the practice of prescribing puberty blocking treatment to children and young people at the Gender Identity Development Service managed by the Tavistock and Portman NHS Foundation Trust. The Court of Appeal in its judgement2 found the Trust’s practices to be lawful, and overturned previous guidance given by the High (...) Court which had contradicted the 'Gillick principle' regarding whether a child or young person could consent to medical treatment, without the consent of its parent. Despite this legal success, concerns over the GIDS continued. In September, NHS England commissioned an independent and wide-ranging review of gender identity services for children and young people led by Dr Hilary Cass, past president of the Royal College of Paediatrics and Child Health. Dr Cass’s Interim review, published in March,3 has resulted in a decision by NHS England to close the GIDS at the Trust by Spring 2023, and replace it with regional centres at existing children’s hospitals offering more 'holistic care' with ’strong links to mental health services’. It is proposed that regional centres will be established at Great Ormond Street Hospital, and Alder Hey Children’s NHS Foundation Trust. Dr Cass was critical of the clinic’s failure to collect sufficient data on the impact of puberty blockers in under-16s. …. (shrink)

In parts of the world, discussion regarding COVID-19 has shifted towards endemicity, and questions of living with, rather than directly battling, the virus. As a result, ethical questions are being refocussed. The imperative is beginning to shift towards what we can learn from the pandemic, and how we can better prepare for future global outbreaks. Among the questions that need to be addressed is what Covid-29 has taught us about how research can be conducted ethically during major global public health (...) emergencies. It is widely accepted that research has an essential role to play in improving the effectiveness of health interventions in major public health crises.1 Even before COVID-19, a special series published in The Lancet highlighted the critical role of research in humanitarian crises, and lamented the paucity of good data on the effectiveness of health interventions in these particularly demanding contexts.2 The impact of expedited vaccine research on the mortality, morbidity and global disruption of the COVID-19 pandemic would be difficult to exaggerate. But it is clear that one important driver of vaccine hesitancy was public concern about the speed with which research into the vaccines was undertaken and hence the reliability of the data concerning their safety.3 Although for understandable reasons, the focus of attention on ethical research during the COVID-19 pandemic has been on vaccines and anti-virals, research in public health emergencies involves a wide range of activities designed to generate evidence, including social science research – which can be particularly critical in understanding barriers to vaccine uptake for example – along with epidemiological studies and health systems research. One widely acknowledged area of ethical tension concerning research in public health emergencies is between the need for rapid ethical review, and the strong moral requirement …. (shrink)

As the COVID-19 vaccine roll out continues apace, in the higher-income countries at least, concerns remain about the level of vaccine coverage in some health and social care settings. Although most countries have seen a relatively high uptake of vaccination against COVID-19 among staff, there continue to be some pockets of hesitancy. The risk of outbreaks in settings with potentially very vulnerable patients has led some governments across Europe to consider, or to introduce, measures compelling healthcare staff to be vaccinated. (...) The justifiability of mandating the vaccination of healthcare professionals is a longstanding question but it has come to the fore in recent months following a resurgence of cases of COVID-19 and the prevalence of the more transmissible Delta variant. In deciding whether the introduction of a mandate is appropriate, states have to balance a range of ethical and practical considerations. A voluntary approach, backed up with education, respects healthcare workers’ autonomy to make private healthcare decisions, which is valued highly in liberal democracies. However, healthcare professionals also have an obligation to ensure that they do not present a risk of harm to their patients. Similarly, healthcare providers have a responsibility to take appropriate steps to minimise the risk of infection. Alongside balancing these rights and responsibilities, governments must also consider the potential consequences and risks of enforcing vaccine uptake. For example, there are concerns that a coercive approach could deepen mistrust and resentment among people who are genuinely fearful or hesitant. Moreover, a large number of refusals and the subsequent imposition of sanctions, such as suspension or redeployment, could affect the ability of providers to staff necessary services. In the UK, Wales, Northern Ireland and Scotland have all ruled out the introduction of compulsory vaccination. However, in July, the English Parliament voted through …. (shrink)

### Challenge to the abortion act 1967 dismissed In September, the High Court dismissed a judicial review of the Abortion Act 1967 that sought a judgement of incompatibility with the European Convention on Human Rights.1 The case focused on a clause in the Act which permits abortion in England, Scotland and Wales after 24 weeks if there is a substantial risk that, if the child were born, it would suffer from ‘such physical or mental abnormalities as to be seriously handicapped’. (...) The case was brought by three parties: Heidi Crowter, a 24 year old woman living independently with Downs Syndrome and a campaigner for disability rights; a 2 year old boy with DS; and his mother who, when pregnant with him, felt pressure to terminate the pregnancy. The claimants sought a declaration that the clause was incompatible with the right to life; freedom from torture, inhuman or degrading treatment; right to private and family life; and protection from discrimination. Further to this it was also argued that the Act does not permit abortion on the basis that an unborn child has been diagnosed with a non-fatal fetal disability such as DS and that such abortions should not be funded by the state. In dismissing the claim, the judges focused on the ‘margin of appreciation’ that the European law allows domestic states on this issue and the fact that a foetus has never been deemed to have personhood status under the ECHR. The judges noted the ability to provide for a disabled child would vary significantly and that some conditions would only be found late in a pregnancy, after 24 weeks. Stating that the case by its nature did not permit the Court to hear from other perspectives, including women who may be affected by any change to the law and further criminalisation of abortion, the judges emphasised …. (shrink)

In a recent judgment1 the Court of Protection was highly critical of health professionals for continuing to provide clinically-assisted nutrition and hydration in the face of disagreement about the patient’s best interests, without seeking to resolve the issue. This hearing had been set up specifically to consider whether GU’s dignity had been properly protected, and if not why not, given concerns raised by the Official Solicitor about what she considered to be “a complete abrogation of responsibility to consider properly or (...) at all, and to determine whether it was in GU’s best interests and therefore lawful to continue to give him an invasive medical treatment, CANH.” In April 2014, at 63 years old and living in Thailand, GU sustained severe injuries after suffering from an electrocution accident. He sustained a cardiorespiratory arrest with a significant delay before cardiopulmonary resuscitation was started and was unconscious and unresponsive. In September 2014 he was transferred to the UK. In August 2018, GU’s brother made a request for a best interests decision concerning the continuation of CANH. The family met to discuss this and all except GU’s son, agreed that continuing CANH was not in GU’s best interests. In view of the fact that there was not unanimity among the family, a decision was made that CANH should continue. Commenting on this decision, Mr Justice Hayden said ‘the apparent assumption that in the face of family disagreement ‘ therefore will continue to be cared for by nursing staff ” is a troubling non sequitur’ and stressed that ‘family dissent to a medical consensus should never stand in the way of an incapacitated patients’ best interests being properly identified’. He also made clear that the responsibility for ensuring that a best interests assessment is undertaken rests with the …. (shrink)

Les Chants du monde: Le paysage sonore de l’ancienne Mésopotamie. By Anne-Caroline Rendu Loisel. Toulouse: Presses Universitaires du Midi, 2016. Pp. 276, illus. €24.