ABSTRACTPsychiatric research is advancing rapidly, with studies revealing new investigative tools and technologies that are aimed at improving the treatment and care of patients with psychiatric disorders. However, the ethical framework in which such research is conducted is not as well developed as we might expect. In this paper we argue that more thought needs to be given to the principles that underpin research in psychiatry and to the problems associated with putting those principles into practice. In particular, we comment (...) on some of the difficulties posed by the twin imperatives of ensuring that we respect the autonomy and interests of the research subject and, at the same time, enable potentially beneficial psychiatric research to flourish. We do not purport to offer a blueprint for the future; we do, however, seek to advance the debate by identifying some of the key questions to which better answers are required. (shrink)

Psychiatric research is advancing rapidly, with studies revealing new investigative tools and technologies that are aimed at improving the treatment and care of patients with psychiatric disorders. However, the ethical framework in which such research is conducted is not as well developed as we might expect. In this paper we argue that more thought needs to be given to the principles that underpin research in psychiatry and to the problems associated with putting those principles into practice. In particular, we comment (...) on some of the difficulties posed by the twin imperatives of ensuring that we respect the autonomy and interests of the research subject and, at the same time, enable potentially beneficial psychiatric research to flourish. We do not purport to offer a blueprint for the future; we do, however, seek to advance the debate by identifying some of the key questions to which better answers are required. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Clinical CommentaryChong Siow Ann, Associate ProfessorDr. G appears to experiencing symptoms of schizophrenia, which is arguably the most severe mental disorder and which afflicts about one in a hundred people. This is a psychotic disorder that causes disturbances and distortions in thinking, including neurocognitive impairments, perception and behaviour. There is no cure for this often devastating disorder. Current antipsychotic medications can alleviate some of the symptoms but it (...) often comes at a price as these antipsychotics have burdensome side effects.A feature of this disorder is anosognosia, which is a lack of awareness or “insight” that an illness is present. This lack of insight presents a particular challenge because these individuals would, as in the case of Dr. G, refuse needed treatment as they do not perceive that they are ill. This is not necessarily an all-or-none phenomenon but is rather more complex and multidimensional; there might be an unawareness or recognition on behalf of the patient that they are suffering from a mental illness, the failure to appreciate the necessity of treatment; and/or the inability to recognise and define the psychotic symptoms like unusual thoughts and hallucinations as signs of illness1 and in many instances, all three are present. It is also by no means uncommon. Studies have found that between 60% and 80% of people with schizophrenia lack awareness of their illness to varying degrees.2This phenomenon remains an enigma. Some regard it as a form of psychological defence against the harsh reality of a psychotic illness — awareness of having a chronic and devastating illness might lead to demoralisation, hopelessness and suicide.3 Recent research, however, [End Page 250] indicates that this psychological denial plays a small part, if any, and instead has found an association with certain neuropsychological and neurocognitive deficits,4 as well as functional and structural brain abnormalities in the frontal lobe of the brain.5The prevailing clinical view thus is that this is an intrinsic and organic aspect of the schizophrenic illness which has nothing to do with wilfulness but rather the incapacity to perceive the presence of the illness. Edwin Fuller Torrey, an eminent psychiatrist and executive director of the Stanley Medical Research Foundation, calls anosognosia the “single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications”, and he has remarked that “to keep talking about civil liberty is illogical. Patients are anything but free when they’re at the beck and call of their own delusions”.6It is also this view that it is a product of a brain disorder that some — particularly patients — find unacceptable. At one level, it does not take into context the person’s own experiences, and at a deeper level it calls into question the conception of the self with its capacity to exercise judgements and the autonomy to make decisions.This is a perennial ethical issue in psychiatry when people with severe mental illnesses refuse treatment. This becomes a Catch-22 situation where part of the illness that needs treatment is also preventing any treatment to be given: implicit in the principle of informed consent for treatment is that the person should be aware of the nature and course of their illness and acknowledge the need for treatment. While there are laws for involuntary commitment, the bar is usually high in that there must be a clear and present risk of harm to the person or others. Alan Stone, a professor of law and psychiatry at Harvard University proposed a possible justification for involuntary treatment based on his “thank-you theory” which assumes that patients will become well and subsequently agree that the intervention was in their best interests but research suggests that only half of these patients would admit so.7One suggested mechanism is the use of advance directives — psychiatry’s version of the living will in which people can specify what sort of medical care they would like should they become mentally unwell and unable to exercise appropriate judgement. An intrinsic part of this might include a “Ulysses contract” — just as Ulysess instructed his crew to lash him to the mast of the his ship so that he could... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Underplayed Ethics and the Dilemmas of Psychiatric CareChong Siow Ann and Tamra LysaghtThe practice of psychiatry is fraught with uncertainty. The exact causes and the biological substrates underlying mental disorders remain to be elucidated; even the diagnosis of these disorders is descriptive and not based on an etiological understanding and no biological diagnostic markers have been validated. The manifestation of almost all mental disorders results from a complex (...) interaction of biological and environmental factors which encompasses the patient’s unique life history, experiences and relationship with others and the community. In the face of such uncertainties — at times extending to the types of treatment (psychiatry is generally acknowledged not be an exact science) — it has been argued that adopting a pragmatic approach is necessary.1 Accordingly, this approach necessitates high ethical standards among mental health practitioners.Some mental illnesses are associated with varying degrees and types of cognitive impairments. Others have certain symptoms like auditory hallucinations and delusions that might severely compromise the patients’ autonomy, distort their sense of reality, increase the risk of harm to themselves or others and render them incapable of making informed decisions in their treatment and participation in research.Consequently, there are issues that are particular to the provision of mental healthcare. These include the need for enforced involuntary treatment with the corollary of depriving a patient of his personal liberty even [End Page 173] though it is often justified on the grounds that it is in the patient’s best interests. However, at times, it is the legal and societal obligation of mental health practitioners to protect those who might be harmed from the patient’s action that might seem to be more pressing. In this situation of double agency, lies the tension of providing confidential care for patients and acting as “an agent of the state” where that patient’s confidentiality might be breached and his liberty infringed upon. This situation is further aggravated by the stigma that clings ever so tenaciously to those who suffer from mental disorders and where it is the norm to stereotype them as dangerous and unpredictable.Consideration of a patient’s autonomy is also challenged by characteristics that are unique to the practice of psychiatry. The prescription of certain psychotropic medications can alter how people think and feel, while psychotherapy works towards changing the patient’s views and values. The philosopher, Jennifer Radden, describes this process as “re-forming the patient’s whole self or character … akin to the responsibilities of raising children”.2 The psychotherapeutic relationship is thus particularly personal and intimate because patients are asked to provide information that often reveals their innermost feelings, fears and fantasies. This information is provided on the basis of trust and assurance of confidentiality, and with expectation of being helped.Jeremy Holmes and Gwen Adshead have elaborated on the vulnerability of patients seeking psychotherapy: they might be particularly susceptible to exploitation because their past experiences of being exploited have led to their distress and help seeking — their dependency and the extreme privacy of the therapeutic relationship make any transgression difficult to be uncovered.3 There is a calamitous combination of the “unconscious wish in the patient to be used” with the complicity of an unethical therapist seeking to fulfil his own interests.4As in any other doctor-patient relationship, the relationship between the mental healthcare practitioner and the patient is one of unequal power where the former is ascendant. While that power should be exercised to heal and to relieve suffering, it also gives the practitioner tremendous power “to harm, reject, misunderstand, or exploit patients who struggle with the experience of mental illness, which itself may generate helplessness, despair, distress, and exceptional dependence on the clinician”.5 Given the potential of doing good and harm coupled with the likelihood of being so significant in the life of the patient,6 providing care for those with mental disorders and distress is necessarily ethically exacting — arguably more so than in other medical practice settings. [End Page 174]This precariousness has led to the suggestion that ethics in psychiatry should have a special status and that the more general principles of biomedical ethics are too limited in scope to... (shrink)

A prevailing issue in clinical research is the duty clinicians have to treat or prevent the progression of disease during a study that they are conducting. While all clinical researchers have a duty of care for the patients who participate in clinical research, intervening at the onset or progression of disease may skew results and have a negative impact on the scientific validity of a study. Extreme examples of failures to intervene can be found in the Tuskegee syphilis study and (...) in an attempt to determine if cervical smears were an accurate predictor of cancer, which was uncovered by the Cartwright Inquiry. However, the issue arises in all research where delay in intervention can cause harm. A current study in Singapore is investigating the significance of an ‘ultra-high risk’ state that may constitute the prodromal phase of psychosis. This project called ‘The Longitudinal Youth at Risk Study’ is potentially contentious because it is recruiting young people who are identified as being ‘at risk’ of developing psychosis. In this paper, the decision to offer treatment to all participants as well as a fast track for those who are assessed to have developed serious mental illness into treatment is discussed. It is argued that this approach is ethically justified because of the duty of care that is owed to research participants, and suggests that the principle of equipoise may be used to guide intervention decisions in other clinical research protocols. (shrink)

Aims: To examine the extent of social stigma toward diabetes among Singapore's multi-ethnic general population and determine whether this differs across socio-demographic sub-groups.Methods: Data for this study came from a nationwide cross-sectional study. A diabetes stigma questionnaire comprising Social Distance Scale and Negative Attitudes and Stereotyping Scale was administered to those respondents who had not been diagnosed with diabetes. Exploratory factor analysis was conducted to determine the dimensionality of the instruments and validated using confirmatory factor analysis. Multiple linear regression analysis (...) was conducted to examine associations between socio-demographic factors and measures of diabetes stigma.Results: In all, 2,895 participants were recruited from the general population giving a response rate of 66.2%. Factor analyses found that a one-factor model resulted in an acceptable fit for both stigma scales, which measured social distance and negative attitudes and stereotyping, respectively. Multiple linear regression analyses identified Indian ethnicity, higher personal income and having close friends or family members who had been diagnosed with diabetes to be significantly associated with lower social distance scores while those aged 50–64 years and those with secondary and vocational education were significantly associated with higher social distance scores. Those with a personal income of SG$2,000–3,999 and SGD $6,000 and above, and those with close friends or family members diagnosed with diabetes were significantly associated with lower negative attitudes and stereotyping scores. In contrast those aged 35 years and above, those with primary education and below, and those of Malay ethnicity were significantly associated with higher negative attitudes and stereotyping scores.Conclusions: The study found a relatively low level of stigma toward diabetes in the general population of Singapore, although some stigmatizing beliefs emerged. While greater knowledge of diabetes could reduce stigma, anti-stigma messaging should be incorporated into the “War on Diabetes” programme in Singapore. (shrink)

ABSTRACT The Dutch case of Brongersma presents novel challenges to the definition and evaluation of voluntary euthanasia since it involved a doctor assisting the suicide of an individual who was (merely?) ‘tired of life’. Legal officials had called on the courts to ‘set a principled boundary’, excluding such cases from the scope of permissible voluntary euthanasia, but they arguably failed. This failure is explicable, however, since the case seems justifiable by reference to the two major principles in favour of that (...) practice, respect for autonomy and beneficence. Ultimately, it will be argued that those proponents of voluntary euthanasia who are wary of its use in such circumstances may need to draw upon ‘practical’ objections, in order to erect an otherwise arbitrary perimeter. Furthermore, it will be suggested that the issues raised by the case are not peculiarly Dutch in nature and that, therefore, there are lessons here for other jurisdictions too. (shrink)

Western science has generally addressed human nature in its most negative aspects-the human potential for violence, the genetic and biochemical bases for selfishness, depression, and anxiety. In contrast, Tibetan Buddhism has long celebrated the human potential for compassion, and is dedicated to studying the scope, expression, and training of compassionate feeling and action. Science and Compassion examines how the views of Western behavioral science hold up to scrutiny by Tibetan Buddhists. Resulting from a meeting between the Dalai Lama, leading Western (...) scholars, and a group of Tibetan monks, the volume includes essays exploring points of difference and overlap between the two perspectives. Opening with the story of the extraordinary meeting in Dharamsala India, the book then takes the reader through the best of what Western behavioral scientific tradition has to say about altruism, ethics, empathy, and compassion-looking at how different elements of this science are challenged by cross-cultural examination. In a series of essays, the participating scientists and scholars ask not only how Tibetan and Western understandings of emotion differ, but how Western behavioral science might broaden and enrich its understanding of human nature to do justice to the study of human emotions. An essay by the Dalai Lama reveals his views on human nature, offering a useful exposition of the Buddhist point of view. Also included are direct excerpts from the dialogues themselves, which are filled with intellectual intensity, moments of convergence, and frequent humor. This extraordinary cross-cultural dialogue about our most essential natures will appeal to scientists, scholars, and the educated lay reader. (shrink)

To explain social learning without invoking the cognitively complex concept of imitation, many learning mechanisms have been proposed. Borrowing an idea used routinely in cognitive psychology, we argue that most of these alternatives can be subsumed under a single process, priming, in which input increases the activation of stored internal representations. Imitation itself has generally been seen as a This has diverted much research towards the all-or-none question of whether an animal can imitate, with disappointingly inconclusive results. In the great (...) apes, however, voluntary, learned behaviour is organized hierarchically. This means that imitation can occur at various levels, of which we single out two clearly distinct ones: the a rather detailed and linear specification of sequential acts, and the a broader description of subroutine structure and the hierarchical layout of a behavioural Program level imitation is a high-level, constructive mechanism, adapted for the efficient learning of complex skills and thus not evident in the simple manipulations used to test for imitation in the laboratory. As examples, we describe the food-preparation techniques of wild mountain gorillas and the imitative behaviour of orangutans undergoing to the wild. Representing and manipulating relations between objects seems to be one basic building block in their hierarchical programs. There is evidence that great apes suffer from a stricter capacity limit than humans in the hierarchical depth of planning. We re-interpret some chimpanzee behaviour previously described as and suggest that all great apes may be able to imitate at the program level. Action level imitation is seldom observed in great ape skill learning, and may have a largely social role, even in humans. (shrink)

The proposed volumes are aimed at a multidisciplinary audience and seek to fill the gap between law, semiotics and visuality providing a comprehensive theoretical and analytical overview of legal visual semiotics. They seek to promote an interdisciplinary debate from law, semiotics and visuality bringing together the cumulative research traditions of these related areas as a prelude to identifying fertile avenues for research going forward. Advance Praise for Law, Culture and Visual Studies This diverse and exhilarating collection of essays explores the (...) many facets both historical and contemporary of visual culture in the law. It opens a window onto the substantive, jurisdictional, disciplinary and methodological diversity of current research. It is a cornucopia of materials that will enliven legal studies for those new to the field as well as for established scholars. It is a 'must read' that will leave you wondering about the validity of the long held obsession that reduces the law and legal studies to little more than a preoccupation with the word. Leslie J Moran Professor of Law, Birkbeck College, University of London Law, Culture and Visual Studies is a treasure trove of insights on the entwined roles of legality and visuality. From multiple interdisciplinary perspectives by scholars from around the world, these pieces reflect the fullness and complexities of our visual encounters with law and culture. From pictures to places to postage stamps, from forensics to film to folklore, this anthology is an exciting journey through the fertile field of law and visual culture as well as a testament that the field has come of age. Naomi Mezey, Professor of Law, Georgetown University Law Center, Washington, D.C., USA This highly interdisciplinary reference work brings together diverse fields including cultural studies, communication theory, rhetoric, law and film studies, legal and social history, visual and legal theory, in order to document the various historical, cultural, representational and theoretical links that bind together law and the visual. This book offers a breath-taking range of resources from both well-established and newer scholars who together cover the field of law's representation in, interrogation of, and dialogue with forms of visual rhetoric, practice, and discourse. Taken together this scholarship presents state of the art research into an important and developing dimension of contemporary legal and cultural inquiry. Above all, Law Culture and Visual Studies lays the groundwork for rethinking the nature of law in our densely visual culture: How are legal meanings produced, encoded, distributed, and decoded? What critical and hermeneutic skills, new or old, familiar or unfamiliar, will be needed? Topical, diverse, and enlivening, Law Culture and Visual Studies is a vital research tool and an urgent invitation to further critical thinking in the areas so well laid out in this collection. Desmond Manderson, Future Fellow, ANU College of Law / Research School of Humanities and the Arts, Australian National University, Australia. (shrink)

Imitation research has been hindered by (1) overly molecular analyses of behaviour that ignore hierarchical structure, and (2) attempts to disqualify observational evidence. Program-level imitation is one of a range of cognitive skills for scheduling efficient novel behaviour, in particular, enabling an individual to purloin the organization of another's behaviour for its own. To do so, the individual must perceive the underlying hierarchical schedule of the fluid action it observes and must understand the local functions of subroutines within the overall (...) goal-directed process. Action-level imitation, copying strings of actions linearly without any such understanding, is less valuable for acquiring complex behaviour and may often have other, social functions. At present, we lack a mechanistic understanding of the abilities underlying program-level imitation that make it possible for the underlying structure of complex actions to be dissected visually and recreated in behaviour. (shrink)

“Public health legal preparedness” is a term born in the ferment, beginning in the late 1990s, that has led to unprecedented recognition of the essential role law plays in public health and, even more recently, in protecting the public from terrorism and other potentially catastrophic health threats.The initial articulation of public health has not kept pace with rapid evolution in the concept and in practical development of public health preparedness itself. This poses the risk that legal preparedness may fall behind (...) construction of general readiness in the public health system—and may, in fact, undercut achievement of comprehensive public health preparedness for massive threats to health in both the United States and world-wide. Inadvertent results might include both negative health impacts and infringement on individual rights. (shrink)

“Public health legal preparedness” is a term born in the ferment, beginning in the late 1990s, that has led to unprecedented recognition of the essential role law plays in public health and, even more recently, in protecting the public from terrorism and other potentially catastrophic health threats.The initial articulation of public health has not kept pace with rapid evolution in the concept and in practical development of public health preparedness itself. This poses the risk that legal preparedness may fall behind (...) construction of general readiness in the public health system—and may, in fact, undercut achievement of comprehensive public health preparedness for massive threats to health in both the United States and world-wide. Inadvertent results might include both negative health impacts and infringement on individual rights. (shrink)

BackgroundAs the COVID-19 pandemic develops, healthcare professionals are looking for support with, and guidance to inform, the difficult decisions they face. In the absence of an authoritative national steer in England, professional bodies and local organisations have been developing and disseminating their own ethical guidance. Questions inevitably arise, some of which are particularly pressing during the pandemic, as events are unfolding quickly and the field is becoming crowded. My central question here is: which professional ethical guidance should the professional follow?Main (...) bodyAdopting a working definition of “professional ethical guidance”, I offer three domains for a healthcare professional to consider, and some associated questions to ask, when determining whether – in relation to any guidance document – they should “bin it or pin it”. First, the professional should consider the source of the guidance: is the issuing body authoritative or, if not, at least sufficiently influential that its guidance should be followed? Second, the professional should consider the applicability of the guidance, ascertaining whether the guidance is available and, if so, whether it is pertinent. Pertinence has various dimensions, including whether the guidance applies to this professional, this patient and/or this setting, whether it is up-to-date, and whether the guidance addresses the situation the professional is facing. Third, the professional should consider the methodology and methods by which the guidance was produced. Although the substantive quality of the guidance is important, so too are the methods by which it was produced. Here, the professional should ask whether the guidance is sufficiently inclusive – in terms of who has prepared it and who contributed to its development – and whether it was rigorously developed, and thus utilised appropriate processes, principles and evidence.ConclusionAsking and answering such questions may be challenging, particularly during a pandemic. Furthermore, guidance will not do all the work: professionals will still need to exercise their judgment in deciding what is best in the individual case, whether or not this concerns COVID-19. But such judgments can and should be informed by guidance, and hopefully these preliminary observations will provide some useful pointers for time-pressed professionals. (shrink)

BackgroundDespite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘ethical challenge(s)’ and closely related terms as used in current healthcare research literature.MethodsRapid review to identify peer-reviewed reports examining ‘ethical challenge(s)’ in any context, extracting data on definitions of ‘ethical challenge(s)’ (...) in use, and synonymous use of closely related terms in the general manuscript text. Data were analysed using content analysis. Four databases (MEDLINE, Philosopher’s Index, EMBASE, CINAHL) were searched from April 2016 to April 2021.Results393 records were screened, with 72 studies eligible and included: 53 empirical studies, 17 structured reviews and 2 review protocols. 12/72 (17%) contained an explicit definition of ‘ethical challenge(s), two of which were shared, resulting in 11 unique definitions. Within these 11 definitions, four approaches were identified: definition through concepts; reference to moral conflict, moral uncertainty or difficult choices; definition by participants; and challenges linked to emotional or moral distress. Each definition contained one or more of these approaches, but none contained all four. 68/72 (94%) included studies used terms closely related to synonymously refer to ‘ethical challenge(s)’ within their manuscript text, with 32 different terms identified and between one and eight different terms mentioned per study.ConclusionsOnly 12/72 studies contained an explicit definition of ‘ethical challenge(s)’, with significant variety in scope and complexity. This variation risks confusion and biasing data analysis and results, reducing confidence in research findings. Further work on establishing acceptable definitional content is needed to inform future bioethics research. (shrink)

Background There is growing interest in the use and incorporation of empirical data in bioethics research. Much of the recent focus has been on specific “empirical bioethics” methodologies, which attempt to integrate the empirical and the normative. Researchers in the field are, however, beginning to explore broader questions, including around acceptable standards of practice for undertaking such research. The framework: In this article, we further widen the focus to consider the overall shape of an empirical bioethics research project. We outline (...) a framework that identifies three key phases of such research, which are conveyed via a landscaping metaphor of Mapping-Framing-Shaping. First, the researcher maps the field of study, typically by undertaking literature reviews. Second, the researcher frames particular areas of the field of study, exploring these in depth, usually via qualitative research. Finally, the researcher seeks to shape the terrain by issuing recommendations that draw on the findings from the preceding phases. To qualify as empirical bioethics research, the researcher will utilise a methodology that seeks to bridge these different elements in order to arrive at normative recommendations. We illustrate the framework by citing examples of diverse projects which broadly adopt the three-phase framework. Amongst the strengths of the framework are its flexibility, since it does not prescribe any specific methods or particular bridging methodology. However, the framework might also have its limitations, not least because it appears particularly to capture projects that involve qualitative – as opposed to quantitative – research. Conclusions Despite its possible limitations, we offer the Mapping-Framing-Shaping framework in the hope that this will prove useful to those who are seeking to plan and undertake empirical bioethics research projects. (shrink)

This work focuses upon decisions to withhold or withdraw life-supporting treatment from incompetent patients. It offers a critical examination of the latest developments with a view to developing a new framework for resolving disputes in the clinic that is not only theoretically robust but also practically relevant.

The four principles approach to biomedical ethics points to respect for autonomy, beneficence, non-maleficence and justice as the norms that should guide moral agents working in the biosciences, and particularly in health care. While the approach is well known, it is not without its critics. In this paper, which is primarily aimed at health professionals and students (from various disciplines) who are studying health care ethics, I consider four problems with the four principles, which respectively claim that the approach is (...) imperialist, inapplicable, inconsistent and inadequate. In keeping with the aims of the ‘five-minute focus’, the primary objective is to introduce these debates, rather than seek to resolve them. However, I will suggest that the approach does have its merits, not least for time-pressed clinicians who are keen to keep an eye on the ethical dimensions of their practices, and for students training in the health care professions, provided that they appreciate that the approach provides only a starting point for, and not the end point of, moral deliberation. (shrink)

ABSTRACT The Dutch case of Brongersma presents novel challenges to the definition and evaluation of voluntary euthanasia since it involved a doctor assisting the suicide of an individual who was (merely?) ‘tired of life’. Legal officials had called on the courts to ‘set a principled boundary’, excluding such cases from the scope of permissible voluntary euthanasia, but they arguably failed. This failure is explicable, however, since the case seems justifiable by reference to the two major principles in favour of that (...) practice, respect for autonomy and beneficence. Ultimately, it will be argued that those proponents of voluntary euthanasia who are wary of its use in such circumstances may need to draw upon ‘practical’ objections, in order to erect an otherwise arbitrary perimeter. Furthermore, it will be suggested that the issues raised by the case are not peculiarly Dutch in nature and that, therefore, there are lessons here for other jurisdictions too. (shrink)

BackgroundDuring the arrival of the COVID-19 pandemic, various professional ethical guidance was issued to (and for) health and social care professionals in England and Wales. Guidance can help to inform and support such professionals and their patients, clients and service users, but a plethora of guidance risked information overload, confusion, and inconsistency. MethodsDuring the early months of the pandemic, we undertook a rapid review, asking: what are the principles adopted by professional ethical guidance in England and Wales for dealing with (...) COVID-19? We undertook thematic content analysis of the 29 documents that met our inclusion criteria.ResultsThe 29 documents captured 13 overlapping principles: respect, fairness, minimising harm, reciprocity, proportionality, flexibility, working together, inclusiveness, communication, transparency, reasonableness, responsibility, and accountability.ConclusionsWe intend this attempt to collate and outline the prominent principles to be helpful, particularly, for healthcare practice during the COVID-19 pandemic and, hopefully, for future pandemic planning. We also offer some reflections on the guidance and the principles therein. After describing the principles, we reflect on some of the similarities and differences in the guidance, and the challenges associated not only with the specific guidance reviewed, but also with the nature and import of “professional ethical guidance”. (shrink)

Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article (...) explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK. Such specialist services show promise, as they are less formal and adversarial than the courts and they appear capable of offering expert ethical advice. However, further research is needed into such services – and into generalist ethics support services – in order to gauge whether this is indeed a promising development. (shrink)

This new edition of The Cambridge Medical Ethics Workbook builds on the success of the first edition by working from the 'bottom up', with a widely praised case ...

Compromise on moral matters attracts ambivalent reactions, since it seems at once laudable and deplorable. When a hotly-contested phenomenon like assisted dying is debated, all-or-nothing positions tend to be advanced, with little thought given to the desirability of, or prospects for, compromise. In response to recent articles by Søren Holm and Alex Mullock, in this article I argue that principled compromise can be encouraged even in relation to this phenomenon, provided that certain conditions are present . In order to qualify (...) as appropriately principled, the ensuing negotiations require disputants to observe three constraints: they should be suitably reflective, reliable and respectful in their dealings with one another. The product that will result from such a process will also need to split the difference between the warring parties. In assisted dying, I argue that a reduced offence of ‘compassionate killing’ can achieve this. I acknowledge, however, that splitting the difference can induce splitting headaches, as there remain certain questions to be answered. Hopefully, however, sufficient work is done here to defend attempts to occupy the middle ground, whether these relate to assisted dying specifically or to other disputed moral matters. (shrink)

ABSTRACT An American surgical team has announced its intention to perform the first human facial transplantation. The team has, however, invited further analysis of the ethical issues before it proceeds and in this paper we take up that challenge in seeking to frame the debate with a particular focus on the recipients of the transplant. We address seven related areas of concern and identify numerous questions that require answers or, perhaps, better answers. We start by examining the nature of the (...) procedure and its intended benefits, why the procedure is being developed, and whether or not this should be viewed as experimental. Having concluded that this is experimental in nature, we then consider the broad question, who is the patient? Here we perceive difficulties in terms of the autonomy of the recipient, the unpredictable effects of receiving the transplant, and the role and influence of society. We conclude by asking whether the question should be ‘whether or not?’ rather than ‘when?’, particularly while the risks of losing face appear to far outweigh the likelihood of gaining face. (shrink)

Simon Woods proposes that we ought to re-orientate clinical decisions at the end of life back towards the patient, so as to honour his or her account of their “global” interests. Woods condemns the current medico-legal approach for remaining too closely tethered to the views of doctors. In this response, I trace the story of Mrs Kelly Taylor, who sought to be sedated and have life-sustaining treatment withdrawn, and I do so in order to show not only why Woods is (...) right to detect an asymmetry in the law but also why there is more to the legal landscape than first appears. I argue that patient choice is indeed bounded—most obviously by the views of the doctors (and the judges), but no less significantly by so-called “public interest” concerns. Woods’ proposal implicitly, and rightly, forces reconsideration of these public interest dimensions of medico-legal decision-making. This often invisible boundary is not presently granted the attention it deserves (not least by the judges themselves). However, as soon as we delve into the ethical values at stake, then it becomes apparent that there are many more questions to be asked regarding their meaning and interaction before we can determine the appropriate ethical prism through which to view the health care endeavour in English medical law. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or contested cases, but (...) there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value of human (...) life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community. Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (shrink)

Live broadcasts of surgical procedures are most common at professional conferences, but they are not uncommon in the wider public arena, with operations having recently been transmitted in realtime on public television in the UK. This phenomenon raises ethical concerns familiar from the professional context, along with some distinct considerations which merit further attention. In this article I aim to examine the issues in terms of patient autonomy, patient welfare and the public interest. Prompted by the interest recently expressed by (...) the Royal College of Surgeons of England, under each topic I pose a series of questions, before closing with a call for enhanced ethical oversight, such as might be afforded by a clinical ethics committee. (shrink)

General Practitioners (GPs) and allied healthcare professionals working in primary care are regularly required to make decisions with, for and on behalf of patients who lack capacity. In England and Wales, these decisions are made for incapacitated adult patients under the Mental Capacity Act 2005, which primarily requires that decisions are made in the patient’s ‘best interests’. Regarding children, decisions are also made in their best interests but are done so under the Children Act 1989, which places paramount importance on (...) the welfare of the child. Decisions for children are usually made by parents, but a GP may become involved if he or she feels a parent is not acting in the best interests of the child. Internationally, including elsewhere in the UK, different approaches are taken. We hypothesise that, despite the legislation and professional guidelines, there are many different approaches taken by GPs and allied healthcare professionals in England and Wales when making these complex decisions with, for and on behalf of patients who lack capacity. To better understand what is known about how these decisions are made, we plan to undertake a scoping review and directed content analysis of the literature. While the majority of decisions made in primary care are made by GPs, for completeness, this review will include all allied healthcare professionals working in primary care. (shrink)

Despite intense academic debate in the recent past over the use of ‘sham surgery’ control groups in research, there has been a recent resurgence in their use in the field of neurodegenerative disease. Yet the primacy of ethical arguments in favour of sham surgery controls is not yet established. Preliminary empirical research shows an asymmetry between the views of neurosurgical researchers and patients on the subject, while different ethical guidelines and regulations support conflicting interpretations. Research ethics committees faced with a (...) proposal involving sham surgery should be aware of its ethical complexities. An overview of recent and current placebo-controlled surgical trials in the field of Parkinson's Disease is provided here, followed by an analysis of the key ethical issues which such trials raise. (shrink)

"This interesting volume of essays on contemporary religion and its ambivalent relationship to modernity not only serves as a testimony to the intellectual influence of Robert Bellah, it establishes a new school of comparative religious and social thought. This Bellahian school--at the intersection of sociological, theological, and contemporary philosophical thinking--has roots in Durkheim and Weber, borrows insights from Marx, Foucault, and Bourdieu, and finds its clearest voice in the writings of Bellah himself. The essays by some of Bellah's colleagues and (...) former students that have been gathered in this volume address some of the most sagacious of these Bellahian themes: the religious dimension of contemporary civil societies, the relationship between religious and capitalist values, the cultural critique of modernity, and the moral visions that hold a promise of civic renewal."—Mark Juergensmeyer, author of Terror in the Mind of God: The Global Rise of Religious Violence (California, 2000). "This highly readable collection of original, thought-provoking essays by leading scholars provides fresh insights into the issues that Robert Bellah has addressed so fruitfully in his long career. Readers will learn much about such issues as how Calvinism contributed to political revolution, why democracies require an enlarged sense of political community, how the religious foundations of Japan and the United States differ, and what it means to be a Christian and an American."—Benton Johnson, coauthor of Vanishing Boundaries: The Religion of Protestant Baby Boomers (1994) and author of Functionalism in Modern Sociology: Understanding Talcott Parsons (1975). (shrink)