The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and (...) should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

The COVID-19 pandemic is putting the NHS under unprecedented pressure, requiring clinicians to make uncomfortable decisions they would not ordinarily face. These decisions revolve primarily around intensive care and whether a patient should undergo invasive ventilation. Certain vulnerable populations have featured in the media as falling victim to an increasingly utilitarian response to the pandemic—primarily those of advanced years or with serious existing health conditions. Another vulnerable population potentially at risk is those who lack the capacity to make their own (...) care decisions. Owing to the pandemic, there are increased practical and normative challenges to following the requirements of the Mental Capacity Act 2005. Both capacity assessments and best interests decisions may prove more difficult in the current situation. This may create a more paternalistic situation in decisions about the care of the cognitively impaired which is at risk of taking on a utilitarian focus. We look to these issues and consider whether there is a risk of patients who lack capacity to make their own care decisions being short-changed. (shrink)

Technology presents a means of improving health outcomes for vast numbers of individuals. It has historically been deployed to streamline healthcare delivery and reach those who would previously have faced obstacles to accessing services. It has also enabled improved health education and management. Telemedicine can be employed in everything from primary care consultations to the monitoring of chronic diseases. Despite recommendation by the World Health Organization, countries have been slow to embrace such technology in the health sector. Nonetheless, it is (...) expected to become more prevalent with increased digitization. Further, amidst the COVID‐19 pandemic, there was a rush to implement forms of telemedicine where possible to prevent patients breaking social distancing rules. In this paper, I present and defend what I term the ‘telemedical imperative’. The telemedical imperative represents a duty for healthcare systems to implement remote access to services where possible, thereby furthering the mission of equity in access to healthcare. It is intended as an addition to in‐person services rather than a replacement. After highlighting the benefits of telemedicine, I provide four criteria that must be met for the telemedical imperative to arise. The first three—safety, effectiveness, and acceptability—are consistent and essential. The fourth adapts to the service in question and requires that there be no other obstacles specific to that service that cannot reasonably be overcome. Finally, I address several potential objections to the telemedical imperative based on more general concerns around the implementation of telemedicine. (shrink)

Volume 20, Issue 7, July 2020, Page 199-201.

Access to abortion care has been hugely affected by the COVID-19 pandemic. This has prompted several governments to permit the use of telemedicine for fully remote care pathways, thereby ensuring pregnant people are still able to access services. One such government is that of England, where these new care pathways have been publicly scrutinised. Those opposed to telemedical early medical abortion care have raised myriad concerns, though they largely centre on matters of patient safeguarding. It is argued that healthcare professionals (...) cannot adequately carry out their safeguarding duties if the patient is not in the room with them. These concerns lack empirical support. Emerging evidence suggests that safeguarding processes may, in fact, be more effective within telemedical abortion care pathways. In this article, we address two specific safeguarding concerns: (1) that a remote consultation prevents a healthcare professional from identifying instances of abuse, and (2) that healthcare professionals cannot reliably confirm the absence of coercion during a remote consultation. We demonstrate that such concerns are misplaced, and that safeguarding may actually be improved in telemedical care pathways as victims of abuse may find it easier to engage with services. It is inevitable that some individuals will fall through the net, but this is unavoidable even with in-person care and thus does not constitute a strong critique of the use of telemedicine in abortion care. These safeguarding concerns set aside, then, we argue that the current approval that enables telemedical early medical abortion should be afforded permanence. (shrink)

Wakefield’s harmful dysfunction analysis asserts that the concept of medical disorder includes a naturalistic component of dysfunction and a value component, both of which are required for disorder attributions. Muckler and Taylor, defending a purely naturalist, value-free understanding of disorder, argue that harm is not necessary for disorder. They provide three examples of dysfunctions that, they claim, are considered disorders but are entirely harmless: mild mononucleosis, cowpox that prevents smallpox, and minor perceptual deficits. They also reject the proposal that dysfunctions (...) need only be typically harmful to qualify as disorders. We argue that the proposed counterexamples are, in fact, considered harmful; thus, they fail to disconfirm the harm requirement: incapacity for exertion is inherently harmful, whether or not exertion occurs, cowpox is directly harmful irrespective of indirect benefits, and colorblindness and anosmia are considered harmful by those who consider them disorders. We also defend the typicality qualifier as viably addressing some apparently harmless disorders and argue that a dysfunction’s harmfulness is best understood in dispositional terms. (shrink)

Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s 'joint (...) account model', we adapt Kilbride’s application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive. (shrink)

The last decade has seen significant developments in UK health policy, with are largely claimed to be evidence based. However, such a characterisation ought, in many cases, to be questioned. Policies can be broadly understood as based primarily on either a logical or empirical case. In the absence of relevant empirical evidence, policymakers understandably appeal to logical cases. Once such evidence is available, however, it can inform policy and enable the logical case to be set aside. Such a linear policy (...) process is not always the reality, and logical cases often continue to guide policy decisions in direct opposition to empirical evidence. In this paper, I discuss two recent examples of this disconnect between logical and empirical cases in UK health policy. The first—organ donation—illustrates an example of a significant policy change being made in opposition to the evidence. I refer to this as the improvidence approach. The second—abortion—provides an example of policymakers not making a change that has extensive supporting data. I refer to this using the more recognisable language of the precautionary approach. Ultimately, I argue that both the improvidence and precautionary approaches are examples of problematic public policy where policymakers provide no explicit justification for going against the evidence. (shrink)

All four UK nations have, in recent years, introduced “opt out” organ donation systems. Whilst these systems are largely similar, they operate independently. A key feature of each policy is a residency requirement, stipulating that opt out may only apply where the deceased had been ordinarily resident in that nation for at least 12 months. A resident of Scotland who dies in England, for example, would not fall under opt out. Public awareness is the underlying reasoning for such stipulations. A (...) residency requirement was appropriate when Wales was the only UK nation with an opt out system, but, I suggest, the continued imposition of intra-UK borders on organ donation is unjustified now that all four nations operate the same policy. Further, it has the potential to limit organ donation. There is a need for all four systems to be amended to allow for UK-wide applicability, such that providing the deceased was ordinarily resident in the UK, they can fall under opt out in any of the four nations. I argue that such an amendment is ethically justified – continuing to satisfy the public awareness criterion – and practically straightforward. In doing so, I emphasise that my proposed amendment should extend only to the four UK nations, stopping short of the Crown Dependencies even though they also operate opt out systems for organ donation. (shrink)

Histories of psychiatry in the United States can shed light on current areas of need in mental health research and treatment. Often, however, these histories fail to represent accurately the distinct trajectories of psychiatric care among black and white populations, not only homogenizing the historical narrative but failing to account for current disparities in mental health care among these populations. The current paper explores two parallel histories of psychiatry in the United States and the way that these have come to (...) influence current mental health practices. Juxtaposing the development of psychiatric care and understanding as it was provided for, and applied to, black and white populations, a picture of the theoretic foundations of mental health emerges, revealing the separate history that led to the current uneven state of psychiatric care. (shrink)

Bioethics, Volume 36, Issue 4, Page 423-433, May 2022.

The freedom to choose for oneself is a part of what it means to be a human being.Jackson J In England and Wales, the Mental Capacity Act 20...

Joint attention (JA) is hypothesized to have a close relationship with developing theory of mind (ToM) capabilities. We tested the co-occurrence of ToM and JA in social interactions between adults with no reported history of psychiatric illness or neurodevelopmental disorders. Participants engaged in an experimental task that encouraged nonverbal communication, including JA, and also ToM activity. We adapted an in-lab variant of experience sampling methods (Bryant, Coffey, Povinelli, & Pruett, 2013) to measure ToM during JA based on participants’ subjective reports (...) of their thoughts while performing the task. This experiment successfully elicited instances of JA in 17/20 dyads. We compared participants’ thought contents during episodes of JA and non-JA. Our results suggest that, in adults, JA and ToM may occur independently. (shrink)

The thesis that humanity progresses in a lawlike manner from inferior states (of wellbeing, cognitive skills, culture, etc.) to superior ones dominated eighteenth- and nineteenth- century thought, including authors otherwise as diverse as Kant and Ernst Haeckel. Positioning himself against this philosophically and scientifically popular view, Nietzsche suggests that humanity is in a prolonged state of decline. I argue that Nietzsche’s rejection of the thesis that progress is inevitable is a product of his acceptance of Lamarck’s use-and-disuse theory of evolution (...) and his belief that society selects for traits beneficial to society and negatively selects for traits that promote individual flourishing. This explains Nietzsche’s emphasis on self-development as cultivating traits that Nietzsche views as valuable and that would, by Lamarck’s theory of evolution, become heritable and so help steer our evolutionary trajectory, correcting our decline. (shrink)

Uterus transplantation (UTx) is highly anticipated for the benefits that it might bring to individuals wanting to carry a pregnancy in order to reproduce who do not have a functioning uterus. The surgery—now having been performed successfully in several countries around the world—remains experimental. However, UTx is at some point expected to become a routine treatment for people without a uterus and considering themselves in need of one: women with absolute uterine factor infertility; transgender women; and even cisgender men who (...) wish to gestate. Given the unique benefits UTx offers, uteri are likely to be ‘in demand’, and such demand, we suggest, will feasibly outstrip supply. Therefore, allocation of those uteri available for transplant may become a pressing issue. In this paper, we consider one aspect of organ allocation—the preferences of donors in making a directed or conditional donation of their uterus. To what extent, in the context of uterus donation, would such donations be ethically permissible? (shrink)

In ‘Rethinking Disease’, Powell and Scarffe1 propose what in effect is a modification of Jerome Wakefield’s2 3 harmful dysfunction analysis (HDA) of medical (including mental) disorder. The HDA maintains that ‘disorder’ (or ‘disease’ in Powell and Scarffe’s terminology) is a hybrid factual and value concept requiring that a biological dysfunction, understood as a failure of some feature to perform a naturally selected function, causes harm to the individual as evaluated by social values. Powell and Scarffe accept both the HDA’s evolutionary (...) biological function component and its incorporation of a value component. Their proposed ‘new twist’ is to revise the value component: ‘Our proposed definition of disease is as follows: a biomedical state is a disease only if it implicates a biological dysfunction that is, or would be, properly disvalued’. So, they propose that a disorder is a ‘properly disvalued dysfunction’ rather than a ‘harmful dysfunction’, an approach they term ‘thickly normative’ in contrast to the thin normative approach of the HDA. There has been a surge of interest recently in better understanding the ‘harm’ component of the HDA. Powell and Scarffe’s analysis is a helpful contribution to this discussion. We focus here exclusively on their proposal regarding the analysis of the concept of disorder and ignore many important related issues that the authors address, ranging from prioritising resource allocation between disorders and non-disorders to whether the concept of disorder should be replaced by a generic welfarist concept. The resolution of these additional issues depends on first understanding ‘disorder’. The authors’ proposed changes to the HDA also deserve evaluation because the HDA, which has been endorsed by leading nosologists,4 plays an influential role in nosological debate across categories of disorder ranging, for example, from sexual paraphilias5 to psychopathy.6 A basic problem is that Powell and Scarffe misinterpret …. (shrink)

Merrill, Booker and Fivush examine the social functions associated with transmitting intergenerational narratives to adolescents and emerging adults and how these family stories affect identity formation in early adulthood. Merrill et al. observed that the intergenerational stories of parents’ transgression and proud moments told by adolescents and emerging adults operate as a way to transmit life lessons, strengthen relationships with the parent and give insights into their parents and their self.

BackgroundChronic kidney disease is a significant cause of global deaths. Those who progress to end-stage kidney disease often commence dialysis as a life-extending treatment. For cognitively impaired patients, the decision as to whether they commence dialysis will fall to someone else. This scoping review was conducted to map existing literature pertaining to how decisions about dialysis are and should be made with, for, and on behalf of adult patients who lack decision-making capacity. In doing so, it forms the basis of (...) a larger body of work that is exploring how these decisions ought to be made.MethodsTo identify relevant papers, searches were conducted on Ovid MEDLINE(R), Embase, PsychINFO, The Cochrane Library, and Web of Science. Inclusion criteria were then applied, requiring that papers: report on empirical studies about how decisions about dialysis are made and/or discuss how decisions about dialysis should be made with, for, and on behalf of adult patients who lack decision-making capacity; be published from 1961 onwards; and be published in English. This resulted in 27 papers eligible for inclusion.ResultsOf note, the majority of papers originated in the United States. There was wide variation across the included papers. Extracted data were grouped under the following themes: involving various parties (patient involvement, family dominance, and wider communication); objectivity about care options (including difficulties with family detachment); cultural sensitivity; medical versus non-medical factors; managing nonadherent patients; and the role and prevalence of substituted judgement. The literature shows that there is inconsistency in the principles and processes surrounding decisions made about dialysis with, for, and on behalf of adult patients who lack decision-making capacity.ConclusionsThis scoping review demonstrates that there is significant variation in both the practice and theory of dialysis decision making with, for, and on behalf of cognitively impaired adult patients. Complexity arises in considering who should get a say, how influential their say should be in a decision, and what factors are most relevant to the decision. A lack of up-to-date literature exploring this issue is highlighted, with this scoping review providing a useful groundwork from which further research can be undertaken. (shrink)

The purpose of this special issue and the conference that inspired it was to address the issue of conceptual integration in a science of consciousness. We felt this to be important, for while current efforts to scientifically investigate consciousness are taking place in an interdisciplinary context, it often seems as though the very terms being used to sustain a sense of interdisciplinary cooperation are working against it. This is because it is this very array of common concepts that generates a (...) sense of unity among consciousness researchers, despite the fact the concepts mean different things in different disciplines. These Concepts of Consciousness include the following: realism, representation, intentionality, information, control, memory and self. Given this list, we believed we could best approach the issue of potential conceptual integration by addressing each concept from different perspectives and asking the following: how do uses of the concept differ, must these meanings be synthesized in order for there to be a unified science of consciousness, is a unified conceptual scheme necessary to establish an independent science of consciousness, is a unified conceptual scheme possible, if it is not possible, why not, and if it is possible, what might it look like? To this end we invited, for each concept, two scholars who made extensive use of the identified concept in their work. The papers entailed in this special issue constitute the outcome of this effort, and in what follows we offer a brief examination of possible forms of integration the papers seem to collectively suggest. (shrink)

We commend Mergenthaler and colleagues for bringing the topic of patient recruitment and consent in intracranial electrophysiology research to the attention of the neuroethics community. Mergenthal...

This paper describes an Intelligent Tutoring System for helping users with ADO.NET called ADO-Tutor. The Intelligent Tutoring System was designed and developed using (ITSB) authoring tool for building intelligent educational systems. The user learns through the intelligent tutoring system ADO.NET, the technology used by Microsoft.NET to connect to databases. The material includes lessons, examples, and questions. Through the feedback provided by the intelligent tutoring system, the user's understanding of the material is assessed, and accordingly can be guided to different difficulty (...) level of exercises and/or the lessons. The Intelligent Tutoring System was evaluated by a group of users and the results were more than satisfactory in terms of the quality of the material and the design of the system. (shrink)

Readers of fiction tend to have better abilities of empathy and theory of mind. We present a study designed to replicate this finding, rule out one possible explanation, and extend the assessment of social outcomes. In order to rule out the role of personality, we first identified Openness as the most consistent correlate. This trait was then statistically controlled for, along with two other important individual differences: the tendency to be drawn into stories and gender. Even after accounting for these (...) variables, fiction exposure still predicted performance on an empathy task. Extending these results, we also found that exposure to fiction was positively correlated with social support. Exposure to nonfiction, in contrast, was associated with loneliness, and negatively related to social support. (shrink)

Derrida and the Inheritance of Democracy provides a theoretically rich and accessible account of Derrida's political philosophy. Demonstrating the key role inheritance plays in Derrida’s thinking, Samir Haddad develops a general theory of inheritance and shows how it is essential to democratic action. He transforms Derrida’s well-known idea of "democracy to come" into active engagement with democratic traditions. Haddad focuses on issues such as hospitality, justice, normativity, violence, friendship, birth, and the nature of democracy as he reads these (...) deeply political writings. (shrink)

En este artículo damos a conocer ciertos documentos que nos aportan nuevos indicios para conocer cuál ha sido la trayectoria seguida por un cuadro atribuido a Zurbarán que perteneció a la Congregación del Oratorio de San Felipe Neri de Sevilla y que, con el tiempo, pasó amanos diferentes. Tal circunstancia nos sirve de pretexto para trazar, bien que someramente, un breve relato acerca de las vicisitudes en las que se vieron inmersos los patrimonios artísticos de los dos templos que sirvieron (...) de marco a las celebraciones religiosas de los oratorianos sevillanos, a saber, la desaparecida iglesia de San Felipe Neri y el templo del antiguo colegio carmelitano de San Alberto. (shrink)

Rules serve many important functions in society. One such function is to codify, and make public and enforceable, a society's desired prescriptions and proscriptions. This codification means that rules come with predefined punishments administered by third parties. We argue that when we look at how third parties punish rule violations, we see that rules and their punishments often serve dual functions. They support and help to maintain cooperation as it is usually theorized, but they also facilitate the domination of marginalized (...) others. We begin by reviewing literature on rules and third-party punishment, arguing that a great deal of punishment research has neglected to consider the unique power of codified rules. We also argue that by focusing on codified rules, it becomes clear that the enforcement of such rules via third-party punishment is often used to exert control, punish retributively, and oppress outgroup members. By challenging idealized theory of rules as facilitators of social harmony, we highlight their role in satisfying personal punishment motives, and facilitating discrimination in a way that is uniquely justifiable to those who enforce them. (shrink)

Proceedings from the ninth International Conference on Artificial Life; papers by scientists of many disciplines focusing on the principles of organization and applications of complex, life-like systems. Artificial Life is an interdisciplinary effort to investigate the fundamental properties of living systems through the simulation and synthesis of life-like processes. The young field brings a powerful set of tools to the study of how high-level behavior can arise in systems governed by simple rules of interaction. Some of the fundamental questions include: (...) What are the principles of evolution, learning, and growth that can be understood well enough to simulate as an information process? Can robots be built faster and more cheaply by mimicking biology than by the product design process used for automobiles and airplanes? How can we unify theories from dynamical systems, game theory, evolution, computing, geophysics, and cognition? The field has contributed fundamentally to our understanding of life itself through computer models, and has led to novel solutions to complex real-world problems across high technology and human society. This elite biennial meeting has grown from a small workshop in Santa Fe to a major international conference. This ninth volume of the proceedings of the international A-life conference reflects the growing quality and impact of this interdisciplinary scientific community. (shrink)

Molecular chaperones in cells constantly monitor and bind to exposed hydrophobicity in newly synthesized proteins and assist them in folding or targeting to cellular membranes for insertion. However, proteins can be misfolded or mistargeted, which often causes hydrophobic amino acids to be exposed to the aqueous cytosol. Again, chaperones recognize exposed hydrophobicity in these proteins to prevent nonspecific interactions and aggregation, which are harmful to cells. The chaperone‐bound misfolded proteins are then decorated with ubiquitin chains denoting them for proteasomal degradation. (...) It remains enigmatic how molecular chaperones can mediate both maturation of nascent proteins and ubiquitination of misfolded proteins solely based on their exposed hydrophobic signals. In this review, we propose a dynamic ubiquitination and deubiquitination model in which ubiquitination of newly synthesized proteins serves as a “fix me” signal for either refolding of soluble proteins or retargeting of membrane proteins with the help of chaperones and deubiquitinases. Such a model would provide additional time for aberrant nascent proteins to fold or route for membrane insertion, thus avoiding excessive protein degradation and saving cellular energy spent on protein synthesis. Also see the video abstract here: https://youtu.be/gkElfmqaKG4. (shrink)