Background Potential clinical interventions to mitigate or eliminate symptoms of Down syndrome (DS) continue to be an active area of pre-clinical and clinical research. However, views of members of the DS community have yet to be fully explored.Methods We conducted a survey with parents/caregivers of people with DS (n = 532) to explore interest in potential therapeutic approaches during fetal development or childhood that may improve neurocognition and modulate the DS phenotype. We qualitatively analyzed open-ended responses.Results Some respondents rejected the (...) development of therapies for DS categorically as being fundamentally ableist and promoting the erasure of diverse individuals. Many reflected tensions between the desire to improve quality of life and an aversion to erasure of a child’s personality.Conclusion Findings suggest that views on identity, personality, and disability may influence the acceptance of new interventions, especially if they are thought to mitigate positive attributes of the phenotype or negatively influence social acceptance of people with DS. (shrink)

Volume 24, Issue 8, August 2024, Page 43-45.

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

As members of the fetal surgery advisory board at a large tertiary care center, we read with great interest Hendriks’ et al. target article proposing a new ethical framework for fetal therap...

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

This article is concerned with developing a philosophical approach to a number of significant changes to academic publishing, and specifically the global journal knowledge system wrought by a range of new digital technologies that herald the third age of the journal as an electronic, interactive and mixed-media form of scientific communication. The paper emerges from an Editors' Collective, a small New Zealand-based organisation comprised of editors and reviewers of academic journals mostly in the fields of education and philosophy. The paper (...) is the result of a collective writing process. (shrink)

Three questions arising from Aggleton & Brown's target article are addressed. (1) Is there any benefit to considering the effects of partial lesions of the anterior thalamic nuclei (AT)? (2) Do the AT have a separate role in the proposed extended hippocampal system? (3) Should perirhinal cortex function be restricted to familiarity judgements?

A growing body of theory has focused on privacy as being contextually defined, where individuals have highly particularized judgments about the appropriateness of what, why, how, and to whom information flows within a specific context. Such a social contract understanding of privacy could produce more practical guidance for organizations and managers who have employees, users, and future customers all with possibly different conceptions of privacy across contexts. However, this theoretical suggestion, while intuitively appealing, has not been empirically examined. This study (...) validates a social contract approach to privacy by examining whether and how privacy norms vary across communities and contractors. The findings from this theoretical examination support the use of contractual business ethics to understand privacy in research and in practice. As predicted, insiders to a community had significantly different understandings of privacy norms as compared to outsiders. In addition, all respondents held different privacy norms across hypothetical contexts, thereby suggesting privacy norms are contextually understood within a particular community of individuals. The findings support two conclusions. First, individuals hold different privacy norms without necessarily having diminished expectations of privacy. Individuals differed on the factors they considered important in calculating privacy expectations, yet all groups had robust privacy expectations across contexts. Second, outsiders have difficulty in understanding the privacy norms of a particular community. For managers and scholars, this renders privacy expectations more difficult to identify at a distance or in deductive research. The findings speak directly to the needs of organizations to manage a diverse set of privacy issues across stakeholder groups. (shrink)

This book begins to recognize and represent the impact of Black feminist and womanist theory in curriculum theorizing. This collection includes a vibrant group of women of color who do curriculum work to reflect on a Black feminist/womanist scholar, text, and/or concept and how it has influenced and enriched their work as scholar-activists.

(2013). Visualizing a Mass Murder: The Portraits of Anders Bering Breivik in Danish National Dailies. Journal of Mass Media Ethics: Vol. 28, No. 1, pp. 64-67. doi: 10.1080/08900523.2013.755083.

The concept that alterated communications between the gut microbiome and the brain may play an important role in human brain disorders has recently received considerable attention. This is the result of provocative preclinical and some clinical evidence supporting early hypotheses about such communication in health and disease. Gastrointestinal symptoms are a common comorbidity in patients with autism spectrum disorders (ASD), even though the underlying mechanisms are largely unknown. In addition, alteration in the composition and metabolic products of the gut microbiome (...) has long been implicated as a possible causative mechanism contributing to ASD pathophysiology, and this hypothesis has been supported by several recently published evidence from rodent models of autism induced by prenatal insults to the mother. Recent evidence in one such model involving maternal infection, that is characterized by alterations in behavior, gut physiology, microbial composition, and related metabolite profile, suggests a possible benefit of probiotic treatment on several of the observed abnormal behaviors. (shrink)

Summary 1. Ecologists and conservation biologists consider many issues when designing a field study, such as the expected value of the data, the interests of the study species, the welfare of individual organisms and the cost of the project. These different issues or values often conflict; however, neither animal ethics nor environmental ethics provides practical guidance on how to assess trade-offs between them. -/- 2. We developed a decision framework for considering trade-offs between values in ecological research, drawing on the (...) field of ecological ethics. We used a case study of the population genetics of three frog species, in which a researcher must choose between four methods of sampling DNA from the study animals. We measured species welfare as the reduction in population growth rate following sampling, and assessed individual welfare using two different definitions: (i) the level of suffering experienced by an animal, and (ii) the level of suffering combined with loss of future life. -/- 3. Tipping the tails of tadpoles ranked as the best sampling method for species welfare, while collecting whole tadpoles and buccal swabbing of adult frogs ranked best for the first and second definitions of individual welfare, respectively. Toe clipping of adult frogs ranked as the worst sampling method for species welfare and the first definition of individual welfare, and equal worst for the second definition of individual welfare. -/- 4. When considering species and individual welfare simultaneously, toe clipping was clearly inferior to the other sampling methods, but no single sampling method was clearly superior to the other three. Buccal swabbing, collecting tadpoles and tail tipping were all preferred options, depending on the definition of individual welfare and the level of precision with which we assessed species welfare. -/- 5.Synthesis and applications. The decision framework we present can be used by ecologists to assess ethical and other trade-offs when planning field studies. A formal decision analysis makes transparent how a researcher might negotiate competing ethical, financial and practical objectives. Defining the components of the decision in this way can help avoid errors associated with human judgement and linguistic uncertainty. (shrink)

Depression experienced by older adults is proving an increasing global health burden, with rates generally 7% and as high as 27% in the USA. This is likely to significantly increase in coming years as the number and proportion of older adults in the population rises all around the world. Therefore, it is imperative that the effectiveness of approaches to the prevention and treatment of depression are understood. Creative arts interventions, including art, dance movement, drama and music modalities, are utilised internationally (...) to target depression and depressive symptoms in older adults. This includes interventions led by trained arts therapists as well as other health and arts professionals. However, to date there has not been a systematic review that reports effects and examines the processes (why) and mechanisms (how) of creative arts interventions are used to address depression in this older age group. This systematic review of studies on creative arts interventions for older adults experiencing depression examined: outcomes of four creative arts modalities (art, dance movement, drama, and music); with particular attention paid to processes documented as contributing to change in each modality; and mechanisms considered to result from these processes. Our analysis of 75 articles (17 art, 13 dance, 4 drama and 41 music) indicates mostly significant quantitative or positive qualitative findings, particularly for interventions led by creative arts therapists. Mechanisms of change gleaned from the studies that were common across modalities include physical (e.g. increased muscle strength; neurochemical effects, such as endorphin release), intra-personal (e.g. enhanced self-concept, strengthened agency and mastery; processing and communication of emotions), cultural (e.g. creative expression, aesthetic pleasure), cognitive (e.g. stimulation of memory) and social (e.g. increased social skills and connection), that were all considered to contribute to reduced depression and symptoms. Recommendations for future research include a stronger focus on testing of processes and mechanisms. (shrink)

Algorithms silently structure our lives. Algorithms can determine whether someone is hired, promoted, offered a loan, or provided housing as well as determine which political ads and news articles consumers see. Yet, the responsibility for algorithms in these important decisions is not clear. This article identifies whether developers have a responsibility for their algorithms later in use, what those firms are responsible for, and the normative grounding for that responsibility. I conceptualize algorithms as value-laden, rather than neutral, in that algorithms (...) create moral consequences, reinforce or undercut ethical principles, and enable or diminish stakeholder rights and dignity. In addition, algorithms are an important actor in ethical decisions and influence the delegation of roles and responsibilities within these decisions. As such, firms should be responsible not only for the value-laden-ness of an algorithm but also for designing who-does-what within the algorithmic decision. As such, firms developing algorithms are accountable for designing how large a role individual will be permitted to take in the subsequent algorithmic decision. Counter to current arguments, I find that if an algorithm is designed to preclude individuals from taking responsibility within a decision, then the designer of the algorithm should be held accountable for the ethical implications of the algorithm in use. (shrink)

Recent scholarship in philosophy, law, and information systems suggests that respecting privacy entails understanding the implicit privacy norms about what, why, and to whom information is shared within specific relationships. These social contracts are important to understand if firms are to adequately manage the privacy expectations of stakeholders. This paper explores a social contract approach to developing, acknowledging, and protecting privacy norms within specific contexts. While privacy as a social contract—a mutually beneficial agreement within a community about sharing and using (...) information—has been introduced theoretically and empirically, the full impact on firms of an alternative framework to respecting the privacy expectations of stakeholders has not been examined. The goal of this paper is to examine how privacy norms develop through social contract’s narrative, to redescribe privacy violations given the social contract approach, and to critically examine the role of business as a contractor in developing privacy norms. A social contract narrative dealing specifically with issues of privacy is an important next step in exploring a social contract approach to privacy. Here, the narrative is used to explain to analyze the dynamic process of privacy norm generation within particular communities. Based on this narrative, individuals within a given community discriminately share information with a particular set of obligations in mind as to who has access to the information and how it will be used. Rather than giving away privacy, individuals discriminately share information within a particular community and with norms governing the use of their information. Similar to contractual business ethics’ impact on global commerce in explaining how and why norms vary across global contexts, the social contract approach to privacy explains how and why norms vary across communities of actors. Focusing on agreements around privacy expectations shifts the responsibility of firms from adequate notification to the responsibility of firms as contractors to maintain a mutually beneficial and sustainable solution. (shrink)

The postmodern critique of Objectivism, Realism and Essentialism has somewhat shattered the foundations of anthropology, seriously questioning the legitimacy of studying others. By confronting the critique and turning it into a vital part of the anthropological debate, A Passage To Anthropology provides a rigorous discussion of central theoretical problems in anthropology that will find a readership in the social sciences and the humanities. It makes the case for a renewed and invigorated scholarly anthropology with extensive reference to recent anthropological debates (...) in Europe and the US, as well as to new developments in linguistic theory and, especially, newer American philosophy. Although the style of the work is mainly theoretical, the author illustrates the points by referring to her own fieldwork conducted in Iceland. A Passage to Anthropology will be of interest to students in anthropology, sociology and cultural studies. (shrink)

Firms use algorithms to make important business decisions. To date, the algorithmic accountability literature has elided a fundamentally empirical question important to business ethics and management: Under what circumstances, if any, are algorithmic decision-making systems considered legitimate? The present study begins to answer this question. Using factorial vignette survey methodology, we explore the impact of decision importance, governance, outcomes, and data inputs on perceptions of the legitimacy of algorithmic decisions made by firms. We find that many of the procedural governance (...) mechanisms in practice today, such as notices and impact statements, do not lead to algorithmic decisions being perceived as more legitimate in general, and, consistent with legitimacy theory, that algorithmic decisions with good outcomes are perceived as more legitimate than bad outcomes. Yet, robust governance, such as offering an appeal process, can create a legitimacy dividend for decisions with bad outcomes. However, when arbitrary or morally dubious factors are used to make decisions, most legitimacy dividends are erased. In other words, companies cannot overcome the legitimacy penalty of using arbitrary or morally dubious factors, such as race or the day of the week, with a good outcome or an appeal process for individuals. These findings add new perspectives to both the literature on legitimacy and policy discussions on algorithmic decision-making in firms. (shrink)

The research into patient involvement is seldom concerned with the significance of cultural and structural factors. In this discussion paper, we illustrate our considerations on some of the challenges in implementing the ideal of patient involvement by showing how such factors take part in shaping the ways in which the intentions to involve patients are converted to practical interventions. The aim was to contribute to the approach dealing with contextual and structural factors of significance for patient involvement. With the idea (...) of “institutional logics,” borrowed from the Danish scholar, Erik Riiskjær, we first demonstrate, with examples from our own research, how patient involvement is interpreted differently within the different logics. Then, we show how the different interpretations of patient involvement meet and conflict in mutual competition as the ideals are sought to be converted to practical interventions. At last, we argue that an adequate theoretical model for the development in the future health care system should be expanded with a “patient logic.”. (shrink)

This study takes its point of departure in an oft‐voiced critique that the French philosopher Michel Foucault gives discourse priority over practice, thereby being deterministic and leaving little space for the individual to act as an agent. Based on an interpretation of the latter part of Foucault's oeuvre, we argue against this critique and provide a methodological discussion of the perception that Foucault's method constitutes, primarily, discourse analysis. We argue that it is possible to overcome this critique of Foucault's work (...) by the application of methodological tools adapted from Foucault's later writings and his diagnosis of his own work as studies of forms of problematization. To shed light on the possibilities that this approach offers to the researcher, we present a reading of aspects of Foucault's work, with a focus on his notion of forms of problematization. Furthermore, we elaborate on concepts from his so‐called genealogical period, namely ‘the dispositive’, strategy and tactics. Our interpretation is supported by examples from a study of the emergence of Danish nursing education, which is based on an analytical framework that we developed in the light of an interpretation of aspects of Foucault's work. (shrink)

In this essay, I consider how spatial experience is fundamentally connected to the development and maintenance of “existential healthy” agency. More specifically, I examine how our formation as choosing, active, and self-defining persons is dependent upon the spatially-thick and interpersonally-interwoven “gestures” through which we develop a lived sense of space as supportive and cooperative or hostile and threatening. I conclude from this both that existentially healthy agency is always already a relational capacity, and, more central to my focus here, that (...) it depends in significant part upon the cultivation of an appropriately supportive spatial environment. (shrink)

Chronic disorders of consciousness, particularly the vegetative and the minimally conscious states, pose serious diagnostic challenges to neurologists and clinical psychologists. A look at the concept of “diagnosis” in medicine reveals its social construction: While medical categorizations are intended to describe facts in the real world, they are nevertheless dependent on conventions and agreements between experts and practitioners. For chronic disorders of consciousness in particular, the terminology has proven problematic and controversial over the years. Novel research utilizing functional brain imaging (...) has demonstrated that a substantial number of patients retain their capabilities to communicate by brain activity even when they are incapable of classic verbal and nonverbal responses due to the dysfunction of their motor behavior. Moreover, thorough diagnostic assessments constitute the foundations for suitable rehabilitation measures. Thus, ethical arguments support the claim that the potential of emerging methods for communication via brain activity should be evaluated comprehensively in patients with chronic disorders of consciousness, once the technological methodology for this endeavor progresses to a reliable and affordable stage. (shrink)

The early withdrawal of students from healthcare education programmes, particularly nursing, is an international concern and, despite considerable investment, retention rates have remained stagnant. Here, a regional study of healthcare student retention is used as an example to frame the challenge of student attrition using a concept from policy development, wicked problem theory. This approach allows the consideration of student attrition as a complex problem derived from the interactions of many interrelated factors, avoiding the pitfalls of small‐scale interventions and over‐simplistic (...) assumptions of cause and effect. A conceptual framework is proposed to provide an approach to developing actions to reduce recurrent investment in interventions that have previously proved ineffective at large scale. We discuss how improvements could be achieved through integrated stakeholder involvement and acceptance of the wicked nature of attrition as a complex and ongoing problem. (shrink)

Though “dwelling” is more commonly associated with Heidegger’s philosophy than with that of Merleau-Ponty, “being-at-home” is in fact integral to Merleau-Ponty’s thinking. I consider the notion of home as it relates to Merleau-Ponty’s more familiar notions of the “lived body” and the “level,” and, in particular, I consider how the unique intertwining of activity and passivity that characterizes our being-at-home is essential to our nature as free beings. I argue that while being-at-home is essentially an experience of passivity—i.e., one that (...) rests in the background of our experience and provides a support and structure for our life that goes largely unnoticed and that is significantly beyond our “conscious” control—being-at-home is also a way of being to which we attain . This analysis of home reveals important psychological insights into the nature of our freedom as well as into the nature of the development of our adult ways of coping and behaving. (shrink)

We present a new method for characterizing the interpretive possibilities generated by elliptical constructions in natural language. Unlike previous analyses, which postulate ambiguity of interpretation or derivation in the full clause source of the ellipsis, our analysis requires no such hidden ambiguity. Further, the analysis follows relatively directly from an abstract statement of the ellipsis interpretation problem. It predicts correctly a wide range of interactions between ellipsis and other semantic phenomena such as quantifier scope and bound anaphora. Finally, although the (...) analysis itself is stated nonprocedurally, it admits of a direct computational method for generating interpretations. (shrink)

Although euthanasia and assisted suicide in people with psychiatric disorders is relatively rare, the increasing incidence of EAS requests has given rise to public and political debate. This study aimed to explore support of the public and physicians for euthanasia and assisted suicide in people with psychiatric disorders and examine factors associated with acceptance and conceivability of performing EAS in these patients. A survey was distributed amongst a random sample of Dutch 2641 citizens and 3000 physicians. Acceptance and conceivability of (...) performing EAS, demographics, health status and professional characteristics were measured. Multivariable logistic regression analyses were performed. Of the general public 53% were of the opinion that people with psychiatric disorders should be eligible for EAS, 15% was opposed to this, and 32% remained neutral. Higher educational level, Dutch ethnicity, and higher urbanization level were associated with higher acceptability of EAS whilst a religious life stance and good health were associated with lower acceptability. The percentage of physicians who considered performing EAS in people with psychiatric disorders conceivable ranged between 20% amongst medical specialists and 47% amongst general practitioners. Having received EAS requests from psychiatric patients before was associated with considering performing EAS conceivable. Being female, religious, medical specialist, or psychiatrist were associated with lower conceivability. The majority of the psychiatrists were of the opinion that it is possible to establish whether a psychiatric patient’s suffering is unbearable and without prospect and whether the request is well-considered. The general public shows more support than opposition as to whether patients suffering from a psychiatric disorder should be eligible for EAS, even though one third of the respondents remained neutral. Physicians’ support depends on their specialization; 39% of psychiatrists considered performing EAS in psychiatric patients conceivable. The relatively low conceivability is possibly explained by psychiatric patients often not meeting the eligibility criteria. (shrink)

This book is open access under a CC BY 4.0 license. We must find new and innovative ways of conceptualizing transboundary energy issues, of embedding concerns of ethics or justice into energy policy, and of operationalizing response to them. This book stems from the emergent gap; the need for comparative approaches to energy justice, and for those that consider ethical traditions that go beyond the classical Western approach. This edited volume unites the fields of energy justice and comparative philosophy to (...) provide an overarching global perspective and approach to applying energy ethics. We contribute to this purpose in four sections: setting the scene, practice, applying theory to practice, and theoretical approaches. Through the chapters featured in the volume, we position the book as one that contributes to energy justice scholarship across borders of nations, borders of ways of thinking and borders of disciplines. The outcome will be of interest to undergraduate and graduate students studying energy justice, ethics and environment, as well as energy scholars, policy makers, and energy analysts. (shrink)

Using the Aristotelian virtue of friendship and concept of practical wisdom, this paper argues that engaging in political discourse with friends on social media is conducive to the pursuit of the good life because it facilitates the acquisition of the socio-political information and understanding necessary to live well. Previous work on social media, the virtues, and friendship focuses on the initiation and maintenance of the highest form of friendship (Aristotle’s ‘ideal friendship’) online. I argue that the information necessary to live (...) well can come from non-ideal, civic friends in addition to ideal friends. In order to acquire this information successfully via social media, users should practice inclusive engagement, self-control, discretion, and audience-sensitivity in their cyber interactions. This argument is salient given the current concerns about ‘echo chambers’ or ‘filter bubbles’, in which users ignore or block out friends and news sources that support political perspectives different from one’s own. (shrink)

Video ethics in educational research involving children is a recent topic that has arisen since the increase in the use of visual mediums in research especially with the development of new and ubiquitous internet technologies and social media. This paper emerged as an expressed concerned by a group of scholars associated with the new Video Journal of Education and Pedagogy that was established in 2016. The paper is the result of a collective writing process over a period of a few (...) months that discusses visual studies in education and visual ethics in relation to qualitative research in education, and as it applies to children. The article also uses the newly established convention of open review, publishing the results with the paper. (shrink)

This paper explores models of reflexive feminist science studies through the work of Donna Haraway. The paper argues that Haraway provides an important account of science studies that is both feminist and constructivist. However, her concepts of “situated knowledges” and “diffraction” need further development to be adequate models of feminist science studies. To develop this constructivist and feminist project requires a collective research program that engages with feminist reflexivity as a practice.

In lieu of an abstract, here is a brief excerpt of the content:77 KEMP SMITH, HUME AND THE PARALLELISM BETWEEN REASON AND MORALITY In a letter to a physician written in 1734 Hume expressed a dissatisfaction with the current state of philosophy and criticism, a dissatisfaction which he said had led him to strike out on his own and "seek out some new Medium, by which Truth might be establisht." He then went on to claim success: "After much Study, & (...) Reflection on this, at last, when I was about 18 Years of Age, there seem'd to be open'd up to me a new Scene of Thought, which transported me beyond Measure, & made me, with an Ardor natural to young men, throw up every other Pleasure or Business to apply entirely to it..." The wording suggests that the new Scene of Thought was a clear revelation, but nowhere does Hume tell us what the revelation was. (A clue, perhaps, is to be found in the "Abstract," where Hume says that if anything entitles him to the name of an inventor, "it is the use he makes of 2 the principle of the association of ideas.") Kemp Smith is convinced, however, that he knows what the new Scene of Thought was. According to Kemp Smith, Hume had already discovered that morality rests on feeling alone and depends in no way on insight or evidence, and the new discovery was simply the sudden realization that belief is equally independent of these considerations. I will argue in this paper that the great difficulty in this interpretation is that in those sections of the Treatise and the second Enquiry in which Hume expounds what could be called his moral epistemology he is concerned with pointing out what he considers to be important differences between reason and taste and between understanding and morality. I am not, however, questioning the validity of Kemp Smith's naturalistic interpretation, if it is broadly construed. 78 A curiosity of Kemp Smith's exposition is his citing of passages from Hume, which at first glance anyway seem to weaken, rather than strengthen, his case for the parallelism of moral and factual judgments. I will give two examples, the first being a quotation from the Green and Grose edition of the Enquiry. That Faculty, by which we discern Truth and Falsehood, and that by which we perceive Vice and Virtue had long been confounded with each other, and all Morality was suppos'd to be built on eternal and immutable Relations, which, to every intelligent Mind, were equally invariable as any Proposition concerning Quantity or Number. But a late Philosopher [Mr. Hutcheson, added as a note] has taught us, by the most convincing Arguments, that Morality is nothing in the abstract Nature of Things, but is entirely relative to the Sentiment or mental Taste of each particular [i.e. species] of Being; in the same Manner as the distinctions of sweet and bitter, hot and cold, arise from the particular feeling of each Sense or Organ. Moral Perceptions, therefore, ought not to be class 'd with the Operations of the Understanding, but with the Tastes or Sentiments. On the next page of this book Kemp Smith refers to this passage as part of the evidence for his claim that "the view here taken of our moral judgments of approval and disapproval can be extended to our beliefs regarding matters of fact and existence, and that 'logic', morals and 'criticism' may thus be brought 4 within the scope of the same general principles." The reference to "external and immutable Relations" may have led Kemp Smith to believe that Hume's thesis in this paragraph is the contrast between demonstrative and other kinds of judgment, but the last sentence is a decisive refutation of that interpretation. Hume frequently uses the term "understanding" to refer to causal reasoning, though in this sentence he seems to be using the term in 79 the more inclusive sense that would include demonstration and relations of ideas as well. But I know of no instances in which "understanding" is restricted to what Hume calls science, i.e., demonstration. Kemp Smith also quotes from the last section of Appendix I to the second Enquiry. This passage, appearing in the Selby-Bigge... (shrink)