BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the (...) range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence. (shrink)

Frailty is an age-related dynamic status, characterised by a reduced resistance to stressors due to the cumulative decline of multiple physiological systems. Several researches have highlighted a relationship between physical frailty and cognitive decline; however, the role of specific cognitive domains has not been deeply clarified yet. Current studies have hypothesised that physical frailty and neuropsychological deficits may share systemic inflammation and increased oxidative stress in different neurodegenerative disorders, such as Alzheimer’s and Parkinson’s disease. However, the role of the executive (...) dysfunction should be investigated in a more detailed way using a multidimensional approach. With this aim, we conducted a review of the literature on the few experimental articles published to discuss the existence of a relationship between frailty and cognitive impairment in neurocognitive disorders, particularly focusing on the domain of executive dysfunction. The data suggest that physical frailty and cognitive decline, especially executive dysfunction, are two aspects strongly linked in mild and major neurocognitive disorders due to Alzheimer's and Parkinson's disease. In light of this, a new framework linking ageing, cognitive decline, and neurodegenerative diseases is needed. In order to analyse the effects that ageing processes have on neural decline and neurocognitive disease, and to identify relevant groups of users and patients, future longitudinal studies should adopt a multidimensional approach, in the field of primary prevention and in the continuum from mild to major neurocognitive disorder. (shrink)

This chapter argues that the Covid-19 pandemic has exposed the limits of the mainstream individualistic notion of resilience and, in light of these limits, it advances a new, relational notion of the concept of resilience that contributes to the individuals’ well-being and takes into consideration the role of systemic inequality. The first half of the paper argues that the individualistic notion is flawed in two ways: i) it can foster ill-being because it is cognitively taxing, and ii) it discounts systemic (...) inequality because it transfers the responsibility of any achievement and failure onto the single individual without regard for conditions of oppression. The second half of the paper reconceptualizes the concept of resilience as a relational notion that takes into account structural support as well as conditions of oppression and marginalization. According to this latter notion of resilience, the chapter argues that oppression, lack of material conditions, or lack of structural support are elements that can impact the appropriateness of calls to be resilient. A relational notion of resilience fosters well-being because it puts the collective community at the center (instead of the individual) and it takes into consideration material conditions and structural injustices. (shrink)

Globally, parents and children in same-sex parent families are impacted by many laws related to the parental sexual orientation. These laws vary considerably from one country to another, ranging from full legal recognition to criminalization. The psychological consequences of living in an ambiguous or hostile legal climate likely interfere with parental health, family functioning, and child development. However, a systematic evidence synthesis of the pertinent literature and its placement within a broader psychological model are currently lacking. The aims of this (...) review were thus (1) to systematically review qualitative and quantitative evidence on the impact of sexual orientation laws on same-sex parent families in key domains and (2) to place these findings within a broader model informed by minority stress and family theories. Our review was preregistered and conducted in line with PRISMA guidelines. We searched for qualitative, quantitative, and mixed methods studies on the impact of sexual orientation laws on target outcomes (parental health, family functioning, child outcomes) via systematic database search (PubMed, Scopus, Web of Science) and forward-backward searches. Fifty-five studies published between 1999 and 2020 were eligible for inclusion and were synthesized using a data-based convergent synthesis design. Thirteen descriptive and three overarching analytical themes were identified through thematic synthesis. Linking our findings with minority stress and family theories, we propose a novel legal vulnerability model for same-sex parent families. The model posits that legal vulnerability constitutes an increased risk for parental and child health as well as family functioning through individual and shared pathways between family members. Additionally, the model introduces counteractions that families engage in on the personal, familial, and systemic level to mitigate the impact of legal vulnerability, as well as moderators on the contextual, familial, couple, and individual level that modulate this impact. Implications for research and clinical practice are discussed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 16.4 (2006) 379-396MuseSearchJournalsThis JournalContents[Access article in PDF]Pharmacists and Conscientious Objection *In March 2005, a Wisconsin pharmacist's act of conscience garnered headlines across the United States. After a married woman with four children submitted a prescription for the morning-after pill, the pharmacist, Neil Noesen, not only refused to fill it, but also refused to transfer the prescription to another pharmacist or to return the prescription (...) to the customer. As more such incidents occurred, many states "... decided to consider and enact laws setting the bounds of pharmacists' and other health care workers' professional obligations" (III, Grady 2006, p. 327). Discussions of objector legislation, also referred to as "conscience clauses," "refusal clauses," and "abandonment laws" (III, Appel 2005, p. 279), are not limited to professional ethics, but also draw from philosophical, theological, and legal perspectives. The purpose of this Scope Note is to present a wide variety of viewpoints on the health provider's right to conscience.More than 40 years ago the development of "The Pill" as the first reliable method of birth control not only ushered in a feminist revolution, but also provided a new focus for concerns of conscience for those who were part of the anti-abortion movement based on religious belief in the sanctity of life. Similarly, in the past ten years, worldwide, and seven years (1999) since the emergency contraception "morning after" pill first became available as a prescription item, there has been an upsurge in the number of medical personnel who refuse to prescribe or dispense it on grounds of personal conscience, whether for religious reasons or not. Their actions bring into play issues of power and control for health care personnel and for patients—in this case women, which also raises women's rights issues. Ironically, studies in France, Sweden, and the United Kingdom have shown that emergency contraception does not reduce the abortion rate—it is too infrequently used (II, Glasier 2006).It is important to underline the difference between the "morning-after" pill or "Plan B," which is made up of two progestin pills containing levonorgestrel (a synthetic derivative of the female hormone progesterone), and RU-486 (Mifiprex [End Page 379] or mifipristone with misoprostol). Plan B, if taken within 72 hours post-coitus prevents implantation, and therefore pregnancy, by suppressing the output of luteinizing hormone, the hormone that triggers the ovulation process. Scientists have been unable to determine whether this action could destroy already fertilized eggs, but even if it does, it uses the same mechanism as occurs with the birth-control pill, that was developed some 45 years ago. By contrast, RU-486 acts up to 49 days after implantation by blocking the action of progesterone in order to terminate the pregnancy and as such is an abortifacient (II, US FDA 1).On 24 August 2006, the U.S. Food and Drug Administration announced approval of the Plan B pill for over-the-counter (OTC ) sales (II, US FDA 2). Although this action makes the drug more widely available, it remains to be seen whether pharmacists who are conscientious objectors and who refuse to dispense it also will refuse to provide it OTC.A survey article by Rebecca Dresser (II, 2005, p. 9) succinctly sums up the problem for conscientious objectors: "Because emergency contraception can act to block implantation of a fertilized egg, people who believe in protection of human life after conception find it morally objectionable."When conscientious objections are raised over abortion or birth control services performed, prescribed, or dispensed, they affect not only the health professionals—physicians, pharmacists, nurses, and health technicians—who may object, as well as their colleagues and/or managers, but also the consumers: the female patients who are then forced to reconsider or to seek an alternative supplier, as well as their spouses or partners. Alta Charo (II, 2005, p. 2473) makes the point that the patient needs to have access to a system of counseling and referral "so... (shrink)

This paper empirically investigates the impact of cognitive board diversity in education, expertise, and tenure facets on financial distress likelihood in the emerging economy of China. This study examines how this relationship varies across State-Owned Enterprises and Non-State-Owned Enterprises. Paper argues that the Chinese stock market, as a typical emerging market, is an excellent laboratory for studying the impact of board diversity on the probability of financial distress. Its underdeveloped financial system and inadequate investor protection leave firms unprotected from financial (...) hardship. A sample of 12,366 observations from 1,374 firms from 2010 to 2018 shows that cognitive diversity qualities are positively linked with Z-score, implying that directors with different educational backgrounds, financial skills, and tenures can assist in reducing the probability of financial distress. Cognitive board diversity reduces the likelihood of financial distress in SOEs and NSOEs. However, tenure diversity is insignificant in all cases. Furthermore, the robustness model “two-step system Generalized Methods of Moments ” demonstrated a positive association between educational diversity, financial expertise, and financial distress scores. The results have significant implications for researchers, managers, investors, regulators, and policymakers. (shrink)

Intellectual Capital is a driving force behind the financial performance of non-financial firms. Investing in intellectual and physical capital allows companies to optimize their financial performance by maximizing resource utilization. This study aims to determine whether IC efficiency impacts the financial performance of listed Pakistani and Indian companies between 2010 and 2020. Return on Assets and Return on Equity are used to calculate financial performance, and IC is calculated using the modified Value-Added Intellectual Coefficient model. Regression analysis is performed using (...) the STATA software developed by the South Texas Art Therapy Association. Human Capital, Structural Capital, and Capital Employed have a significant impact on Pakistani and Indian firms’ financial performance. Resource-based theory supports these findings. The findings should provide management with a prompt to improve financial performance and emphasize the importance of IC. A rare study has addressed the impact of IC on firm financial performance using the MVAIC model, rather than the VAIC model, in Pakistan and India. (shrink)

The phenomenon of digital differentiation, or stark variations in ability to access Internet hardware and/or infrastructure, has been a feature of provision since its early days. This article explores the impact of digital differentiation on two groups of young people, in England and Germany. It is based on fieldwork that took place during the academic year 2018-2019, just before the global pandemic threw the issue of equality of Internet access into sharp relief. The article begins by describing the empirical design (...) of the My Life Online project, including background, sampling, instruments, ethical aspects and the initial data analysis approach taken to ensure reliability and validity. It then develops a further analysis drawing on Halford and Savage’s hybrid Bourdieu/Actor Network Theory model (2010) to map out the socio-technical network surrounding the young people in our study. In this way we identify areas of change and conflict that compound existing social deprivation. We conclude by making a case for a better education policy awareness of the key issues, and more equitable distribution of national infrastructure moving forwards. (shrink)

Putting laypeople in an active role as direct expert contributors in the design of service robots becomes more and more prominent in the research fields of human–robot interaction and social robotics. Currently, though, HRI is caught in a dilemma of how to create meaningful service robots for human social environments, combining expectations shaped by popular media with technology readiness. We recapitulate traditional stakeholder involvement, including two cases in which new intelligent robots were conceptualized and realized for close interaction with humans. (...) Thereby, we show how the robot narrative together with aspects of power balancing stakeholders, such as hardware constraints and missing perspectives beyond primary users, and the adaptivity of robots through machine learning that creates unpredictability, pose specific challenges for participatory design processes in HRI. We conclude with thoughts on a way forward for the HRI community in developing a culture of participation that considers humans when conceptualizing, building, and using robots. (shrink)

How can a confederation of business and industry influence companies and make them more aware of ethical issues? This article examines the work of Norwegian Business and Industry, and the results it has achieved. The author is Assistant Director of NHO, P.b. 5250, Majorstua, 0303 Oslo, and she has been responsible for its business ethics programme for the past three years. This article comes to us through the agency of our Associate Editor for Norway, Dr Heidi von Weltzien Høivik, of (...) the Norwegian School of Management, who has recently been instrumental in founding a Norwegian Centre for Business Ethics. (shrink)

The aim of this article is to explore the evolving discussion surrounding vulnerability and flourishing. This conversation has gained significant relevance in the aftermath of the COVID-19 pandemic and amid global uncertainties, including the effects of violence and war-trauma. The central idea here is to reconsider vulnerability and flourishing not simply as universal experiences tied to one's own humanity and social context, but rather as co-existing, interdependent, and contingent aspects of human existence. Without proposing that human flourishing is conditioned by (...) vulnerability, this perspective seeks to challenge the notion that vulnerability and flourishing are fundamentally separate. The following discussion will not only examine vulnerability and flourishing as theoretical concepts but will also address their practical significance as integral components of the human experience, and how they intersect in a real-life situation. It's important to note that both vulnerability and flourishing are influenced by specific contexts and circumstances, including personal, social, economic and cultural factors. In the course of this discussion, I will provide examples to illustrate these points. The first section will focus on vulnerability, while the second will delve into the concept of flourishing from a Christian perspective, drawing on Miroslav Volf's ideas about a flourishing life. (shrink)

Nanotechnology has recently been identified with principles of sustainability and with a ‘green’ agenda generally . Some maintain that this green dream of nanotechnology is a rather ephemeral societal phenomenon that owes its existence to the campaign ploys of politics and business. This paper argues that deeper lying societal and cognitive structures are at work here that complement or even substantiate in some sense the seemingly manipulative saying of a greening of nanotechnologies. Taking seriously the concept of ‘green nano’, this (...) paper examines the common ground between sustainability discourse and the discourse of nanotechnology. Green nanotechnology is understood as a boundary concept in which disparate discourses and concepts join together. The primary concern of the paper is to show that nanodiscourse and ecodiscourse share visions of control and of excess. Both ecotechnology and nanotechnology accept and incorporate arguments about limited growth, and each develops strategies of control—be it through a new-found precision in the control of material flows or through greater efficiency in product design. (shrink)

Although the main responsibility for informed consent of medical procedures rests with doctors, nurses’ roles are also important, especially as patient advocates. Nurses’ preparation for this role in settings with a hierarchical and communal culture has received little attention. We explored the views of hospital managers and nurses regarding the roles of nurses in informed consent and factors influencing these roles. We conducted a qualitative study in a private, multispecialty hospital in Indonesia. Semi-structured interviews were conducted with seven managers. Two (...) rounds of focus group discussions with nurses (n = 27) were conducted. Constant comparative approach was used in the analysis. Nurses can act as manager, witness, information giver, and advocate in the informed consent process. These roles are influenced by nurses’ preparedness, hospital culture and policy, patients’ understanding, family involvement, and cost-related issues. In preparation for these tasks, nurses should acquire communication skills, clinical knowledge, and legal and ethical knowledge. (shrink)

Alzheimer's disease is the most common neurodegenerative disorder in today's developed world that is also increasingly picked out as a focal theme in fictional literature. In dealing with the subjectivity of human experience, such literature enhances the reader's empathy and is able to teach about moral, emotional and philosophical issues, offering the chance to see situations from a position otherwise possibly never taken by the reader. The understanding and insight so gained may well be unscientific, but the literary approach offers (...) an insight into the whole person's perspective and the particularity and uniqueness of a situation that includes ethical conflicts. A key motif of fictional literature centred around dementia remains the burden the adult-child carer is confronted with, considering the parent's remorseless decline and personality change, the sudden demand for devoted and continuous care, and the constantly changing relationship with the declining parent. In the context of an ever increasing demand for a constructive public discussion regarding end-of-life treatment of demented patients, Christine Devars (Le Piano Désaccordé) and Andrés Barba (Ahora Tocad Música de Baile) illustrate how powerful and burdensome the impact of Alzheimer's disease is on both patient and carer and what extremes may be reached under such truly exceptional circumstances. (shrink)

This article presents an interpretation of Merleau-Ponty's notion of pre-reflective intentionality, explicating the similarities and differences between his and Husserl's understandings of intentionality. The main difference is located in Merleau-Ponty's critique of Husserl's noesis-noema structure. Merleau-Ponty seems to claim that there can be intentional acts which are not of or about anything specific. He defines intentionality by its ``directedness'', which is described as a bodily, concrete spatial motility. Merleau-Ponty's understanding of intentionality is part of his attempt to rewrite the relation (...) between the universal and the particular. He claims that meaning is intrinsic to the phenomenal field and impossible to analyse by a distinction between form and matter. Still, Merleau-Ponty's notion of meaning and philosophy is strictly opposed to any naturalized philosophy. This becomes explicated at the end of the article, where his attempt to embody intentionality is compared to Daniel Dennett's corresponding approach. (shrink)

Im Alltag wie in ethischen Fachdiskussionen verweisen wir häufig auf moralische Intuitionen. Doch welche Art mentaler Zustand sind moralische Intuitionen eigentlich? Wie 'generieren' sie moralische Wertungen? Unter Rückgriff auf zeitgenössische Theorien aus der Philosophie des Geistes argumentiert die Autorin, dass moralische Intuitionen zu konkreten Fällen eine Form der Emotion sind. Sie spezifiziert, in Anlehnung an Millikans biosemantisches Intentionalitätskonzept und Prinz? Emotionstheorie, was diese moralisch wertenden Emotionen auszeichnet und welche mentalen Prozesse ihrem Auftreten zugrunde liegen. Burgbachers Modell gibt eine zeitgemässe, empirisch (...) orientierte Antwort auf die stark diskutierte Vorfrage der Ethik und Metaethik nach der Natur moralischer Intuitionen. Es bietet eine solide Basis für die Diskussion des epistemischen und handlungsbezogenen Status moralischer Intuitionen. (shrink)

Miranda Fricker’s insightful work on epistemic injustice discusses two forms of epistemic injustice—testimonial injustice and hermeneutical injustice. Hermeneutical injustice occurs when the victim lacks the interpretative resources to make sense of her experience, and this lacuna can be traced down to a structural injustice. In this paper, I provide one model of how to fill the conceptual gap in hermeneutical injustice. First, I argue that the victims possess conceptual resources to make sense of their experiences, namely phenomenal concepts. Second, I (...) show how one might work the way up in a two-step process from a subjective, phenomenal concept to a novel, public concept. Finally, I discuss the conditions that have to be met for this process to be successful. The resulting model shows a way how the victims might alleviate hermeneutical injustice by developing novel concepts, given that the dominant group does not care about their predicament. (shrink)

Moral philosophy and psychology have sought to define the nature of right and wrong, and good and evil. The industrial turn of the twentieth century fostered increasingly technological approaches that conjoined philosophy to psychology, and psychology to the natural sciences. Thus, moral philosophy and psychology became ever more vested to investigations of the anatomic structures and physiologic processes involved in cognition, emotion and behavior - ultimately falling under the rubric of the neurosciences. Since 2002, neuroscientific studies of moral thought, emotions (...) and behaviors have become known as – and a part of – the relatively new discipline of neuroethics. Herein we present Part 2 of a bibliography of neuroethics from 2002–2013 addressing the “neuroscience of ethics” – studies of putative neural substrates and mechanisms involved in cognitive, emotional and behavioral processes of morality and ethics. (shrink)

BackgroundThe public’s attitudes to conscientious objection are likely to influence political decisions about CO and trust towards healthcare systems and providers. Few studies examine the pub...

In Arequipa, Peru’s second largest city, engineers work hard to control water flows and provide different sectors with clean and sufficient water. In 2011, only 10 percent of the totality of water used daily by Arequipa’s then close to 1 million people—in households, tourism, industry, and mining—was treated before it was returned to the river where it continues its flow downstream towards cultivated fields and, finally, into the Pacific Ocean. It takes specialized knowledge and manifold technologies to manage water and (...) sustain life in Arequipa, and engineers are central actors for making water flow. Examining the ecology of water management, this article asks to what extent we can talk of a way of knowing and enacting water that is particular to engineers. Through engineering practices, a technical domain emerges as separate from and superior to political and social domains. This production of categories can be understood as practices of purification. However, a purely technical grip on water is never possible. Unruly elements, like weather, contamination, urban dwellers, and competing interests, interfere and make processes of intervention unstable. Water is never completely cleaned, and, equally, the continuous processes of purification of categories and domains take place while other processes work to blur their boundaries. (shrink)

This article reaches out to the audience for controversial religious writing after the English Reformation, by examining the shared language of attainable truth, of clarity and certainty, to be found in Protestant and Catholic examples of the same. It argues that we must consider those aspects of religious controversy that lie simultaneously above and beneath its doctrinal content: the logical forms in which it was framed, and the assumptions writers made about their audiences’ needs and responses. Building on the work (...) of Susan Schreiner and others on the notion of certainty through the early Reformation, the article asks how English polemicists exalted and opened up that notion for their readers’ benefit, through proclamations of visibility, accessibility and honest dealing. Two case studies are chosen, in order to make a comparison across confessional lines: first, Protestant reactions against the Jesuit doctrine of equivocation in the late sixteenth and early seventeenth centuries, which emphasized honesty and encouraged fear of hidden meaning; and second, Catholic opposition to the notion of an invisible-or relatively invisible-church. It is argued that the language deployed in opposition to these ideas displays a shared emphasis on the clear, certain, and reliable, and that which might be attained by human means. Projecting the emphases and assertions of these writers onto their audience, and locating it within a contemporary climate, the article thus questions the emphasis historians of religion place on the intangible-on faith-in considering the production and the reception of Reformation controversy. (shrink)

This paper studies the effects of social comparison on risk taking behavior. In our theoretical framework, decision makers evaluate the consequences of their choices relative to both their own and their peers’ conditions. We test experimentally whether the position in the social ranking affects risk attitudes. Subjects interact in a simulated workplace environment where they perform a work task, receive possibly different wages, and then undertake a risky decision that may produce an extra gain. We find that social comparison matters (...) for risk attitudes. Subjects are more risk averse in the presence of small social gain than social loss. In addition, risk aversion is decreasing in the size of the social gain. (shrink)

Théophile Gautier, French romanticist writer, visits Russia twice in 1858/61. His Voyage en Russie (1866) is not just a travelogue, but rather an intrinsically philosophical text about travelling, about the perception of the own and the other, suggesting “(self)alienation”, “bracketing” of the world and one’s own experience as a means of aesthetic pleasure and intellectual penetration; a reflection on the “gift of the visible”; on the mutual in- and superscriptions of reality, imagination and art – in one word: a “phenomenological” (...) experiment avant la lettre. This paper proposes a reading of Voyage en Russie through the prism of Merleau-Ponty’s phenomenology of perception, in particular of vision. (shrink)