This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)

ABSTRACTThis report on end‐of‐life decision‐making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters.Chapter 1 reviews what is known about end‐of‐life care and opinions about assisted dying in Canada.Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death.Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order.Chapter 4 reviews the (...) experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form.Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document. (shrink)

Euthanasia and assisted suicide have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: voluntary and well-considered request; unbearable suffering without prospect of improvement; informing the patient; lack of a reasonable alternative; independent second physician’s opinion. ‘Unbearable suffering’ must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees. The purpose of this (...) study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. The 416 case summaries available on the RTE website were searched for intellectual disability and autism spectrum disorder. Direct content analysis was used on these nine cases. Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient’s perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards. (shrink)

Cognitive Science, Volume 45, Issue 11, November 2021.

This study analyzes interview data from 37 science and engineering faculty involved in university-industry relations. Faculty are particularly concerned about how these relations affect their work with graduate students. Our analysis is guided by ritual exchange theory and network theory. First, we explore the ways faculty define and redefine what makes industrial or corporate research appropriate or inappropriate for training graduates. Second, we examine difficulties and tensions faculty face when they work with students on industrial or corporate projects. These difficulties (...) and tensions center on intellectual property and we look at how faculty negotiate with industry over restrictions on publication of graduate student and faculty research results, on faculty and graduate student involvement in start-up companies, and on faculty and graduate student ownership of intellectual property. (shrink)

Obesity is the result of people consistently consuming more calories than they expend. A complex interaction of social and environmental conditions affects both energy consumption and physical activity levels. These conditions include, but are not limited to the following factors: the availability of affordable and healthy food; price disparities between healthy and less healthy foods; access to or perceived safety of recreation facilities; and the conduciveness of the physical environment to active modes of transportation, such as walking and biking. As (...) outlined in the “Assessing Laws and Legal Authorities for Obesity Prevention and Control” paper in this supplement issue, laws and government policies in the United States influence nearly all of these social and environmental factors. (shrink)

A major shift has taken place since the 1960s concerning disclosure to patients that they have a diagnosis of cancer and that their disease is considered terminal. Full disclosure is now considered the patient's right in the United States. However, there remain many countries in which nondisclosure is still the norm. When patients from those countries are diagnosed with cancer in America, differences in attitudes and expectations can cause conflict and misunderstanding.

Logics for generally were introduced for handling assertions with vague notions,such as generally, most, several, etc., by generalized quantifiers, ultrafilter logic being an interesting case. Here, we show that ultrafilter logic can be faithfully embedded into a first-order theory of certain functions, called coherent. We also use generic functions (akin to Skolem functions) to enable elimination of the generalized quantifier. These devices permit using methods for classical first-order logic to reason about consequence in ultrafilter logic.

Background: Managing HIV treatment is a complex multi-dimensional task because of a combination of factors such as stigma and discrimination of some populations who frequently get infected with HIV. In addition, patient-provider encounters have become increasingly multicultural, making effective communication and provision of ethically sound care a challenge. Purpose: This article explores ethical issues that health service providers in the United States and Botswana encountered in their interaction with patients in HIV care. Research design: A descriptive qualitative design was used (...) to collect data from health service providers and patients using focused group discussions. This article is based on responses from health service providers only. Participants and context: This article is based on 11 focused group discussions with a total sample of 71 service providers in seven US sites and one Botswana site. Ethical considerations: Ethical review boards at all the study sites reviewed the study protocol and approved it. Ethical review boards of the study’s coordinating centers, Rutgers University and the University of California at San Francisco, also approved it. The study participants provided a written informed consent to participate. Findings: HIV service providers encountered ethical challenges in all the four Beauchamp and Childress’ biomedical ethics of respect for patients’ autonomy, beneficence, justice, and nonmaleficence. Discussion: The finding that HIV service providers encounter ethical challenges in their interaction with patients is supported by prior studies. The ethical challenges are particularly prominent in multicultural care and resource-constrained care environments. Conclusion: Provision of HIV care is fraught with ethical challenges that tend to pose different issues depending on a given care environment. It is important that strong partnerships are developed among key stakeholders in HIV care. In addition, health service providers need to be provided with resources so they can provide quality and ethically sound care. (shrink)

As características do teletrabalho podem contribuir tanto para o aumento quanto para a diminuição do estresse do trabalhador. Este estudo buscou identificar os preditores de estresse, em termos de vantagens e desvantagens do teletrabalho, recursos e demandas psicossociais relacionados ao trabalho e interação trabalho-família, entre servidores da Justiça Federal do Rio Grande do Sul que desenvolvem teletrabalho. Os 130 participantes responderam o questionário de dados demográficos e laborais, escala de estresse percebido, vantagens e desvantagens do teletrabalho, recursos-demandas do trabalho e (...) interação trabalho-família. Análise de regressão linear múltipla identificou um modelo preditivo de estresse composto pelas variáveis de interações trabalho-família e família-trabalho negativas, autoeficácia e sobrecarga. Os resultados apontam fatores de risco e proteção para o estresse entre teletrabalhadores. Ressalta-se a necessidade de legislação laboral nacional que regulamente o teletrabalho, de forma a configurá-lo de maneira mais concreta, permitindo ações visando à saúde dos trabalhadores. (shrink)

Institutional review board delays may hinder the successful completion of federally funded research in the U.S. military. When this happens, time-sensitive, mission-relevant questions go unanswered. Research participants face unnecessary burdens and risks if delays squeeze recruitment timelines, resulting in inadequate sample sizes for definitive analyses. More broadly, military members are exposed to untested or undertested interventions, implemented by well-intentioned leaders who bypass the research process altogether. To illustrate, we offer two case examples. We posit that IRB delays often appear in (...) the service of managing institutional risk, rather than protecting research participants. Regulators may see more risk associated with moving quickly than risk related to delay, choosing to err on the side of bureaucracy. The authors of this article, all of whom are military-funded researchers, government stakeholders, and/or human subject protection experts, offer feasible recommendations to improv... (shrink)

Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.

In this paper we show that the class of fork squares has a complete orthodox axiomatization in fork arrow logic (FAL). This result may be seen as an orthodox counterpart of Venema's non-orthodox axiomatization for the class of squares in arrow logic. FAL is the modal logic of fork algebras (FAs) just as arrow logic is the modal logic of relation algebras (RAs). FAs extend RAs by a binary fork operator and are axiomatized by adding three equations to RAs equational (...) axiomatization. A proper FA is an algebra of relations where the fork is induced by an injective operation coding pair formation. In contrast to RAs, FAs are representable by proper ones and their equational theory has the expressive power of full first-order logic. A square semantics (the set of arrows is ᵎ x ᵎ for some set ᵎ) for arrow logic was defined by Y. Venema. Due to the negative results about the finite axiomatizability of representable RAs, Venema provided a non-orthodox finite axiomatization for arrow logic by adding a new rule governing the applications of a difference operator. We address here the question of extending the type of relational structures to define orthodox axiomatizations for the class of squares. Given the connections between this problem and the finitization problem addressed by I. Németi, we suspect that this cannot be done by using only logical operations. The modal version of the FA equations provides an orthodox axiomatization for FAL which is complete in view of the representability of FAs. Here we review this result and carry it further to prove that this orthodox axiomatization for FAL also axiomatizes the class of fork squares. (shrink)

This paper will discuss the introduction of Restorative Approaches (RA) in schools, contextualising this within a discussion of international concerns about school safety, (in)discipline and school violence. It will explore questions about the compatibility of RA with zero tolerance and positive/assertive discipline approaches and the use of disciplinary exclusion in a ‘risk society’.

Our previous study has shown impaired blood oxygen level-dependent /functional magnetic resonance imaging activation of the visual attention network in strabismic amblyopia. However, there has been no comparison of resting state fMRI activation and functional connectivity in brain regions of interest along the visual attention network including visual cortex, intraparietal sulcus, and frontal eye fields during closed eye resting across the SA, or anisometropic amblyopes groups. Hence, we compared, gray matter volume, amplitude of low frequency fluctuations, regional homogeneity, and FC (...) in the left and right hemisphere ROIs of the visual attention network in SA, AA, and healthy controls. Correlation analyses of corrected visual acuity of amblyopic eye and MRI results were also performed and showed that the LogMAR cVA of the amblyopic eye positively correlated with right zALFF and zReHo FEF of SA and right IPS of AA only. GMV of both left and right hemisphere V1 areas was significantly greater but ALFF was significantly lower for SA compared to AA and HC groups. zALFF and zReHo analyses in the AA and SA groups indicated significantly higher activation than that in the HC group in the right FEF and IPS but lower than that in the HC group in the left FEF, and only the SA group showed lower activation in both V1 areas than the HC group. FC values of the right FEF–left V1, right FEF–right V1, and right FEF–right IPS pathways in the SA and AA groups were also significantly higher than those in the HC group whereas all other FC values were non-significant. Thus, this study indicates that even during resting-state the visual attention network function is impaired in SA and AA participants with only right hemisphere FEF showing significant activation in SA and IPS in AA suggesting that the slower saccade activation times characteristic of amblyopic eyes lead to the dominant eye controlling activation of the visual attention network. (shrink)

Research clearly shows that increasing the number of women in leadership positions yields financial benefits for the organization. Despite this, there has been limited upward movement in the percentage of women in senior leadership positions. Few studies have examined the linkage between masculine culture and the implications for men. Using a mixed methods approach with two studies, this research focused on four aspects of masculine contest cultural norms and how they impact male identity and perceptions of career advancement. Study 1 (...) used a qualitative interview study of 10 male executives and found that masculine contest culture norms were evident but were being perpetuated and reinforced by organizational culture instead of individual masculine identities. In addition, Study 1 demonstrated a shift in masculine contest culture norms reducing the emphasis on the strong male archetype. Study 2 examines the relationship between masculine contest culture attributes impacting perceived opportunities for career development and promotion. We evaluated these relationships through a large‐scale survey study and found that at higher levels of masculine contest culture norms, men's perceptions of procedural justice for career development and promotion were lower compared with women. Broadly, the findings suggest that masculine archetypes of leadership negatively affect men and women. (shrink)

Background Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications. Discussion The study was run concurrently in New Zealand, UK, Israel, Canada and USA and involved testing hypotheses about believability of testimonies regarding alleged child sexual abuse. Ethics committee requirements to conduct this study ranged from nil in Israel to considerable (...) amendments designed to minimise participant harm in New Zealand. Assessment of minimal risk is a complex and unreliable estimation further compounded by insufficient information on probabilities of particular individuals suffering harm. Estimating potential benefits/ risks ratio and protecting participants' autonomy similarly are not straightforward exercises. Summary Safeguarding moral/humane principles should be balanced with promotion of ethical research which does not impede research posing minimal risk to participants. In ensuring that ethical standards are met and research has scientific merit, ethics committees have obligations to participants (to meet their rights and protect them from harm); to society (to ensure good quality research is conducted); and to researchers (to treat their proposals with just consideration and respect). To facilitate meeting all these obligations, the preferable focus should be promotion of ethical research, rather than the prevention of unethical research, which inevitably results in the impediment of researchers from doing their work. How the ethical principles should be applied and balanced requires further consideration. (shrink)

“Additional needs children” is a term often used in the education system to describe children with school-based problems characterised by learning difficulties arising from academic, social and emotional stressors including, but not limited to, clinically diagnosed Neurodevelopmental Disorders (NDD). What has seldom been investigated is what biopsychosocial characteristics and other common comorbid behaviours are associated with academic learning difficulties. Thus, the aim of this study was to investigate the relationship between anxiety levels (Spence Children’s Anxiety Scale- Parent Report), autism traits (...) (Autism Spectrum Quotient – Child Version) and sleep quality (Sleep Disturbance Scale for Children) in ‘additional needs children’ with a diagnosis of Autism Spectrum Disorder (ASD), Language Impairment or Mixed Diagnosis without an intellectual disability. The results demonstrated that the ASD group reported more impairments associated with comorbid anxiety and sleep compared to the other clinically diagnosed groups. Similarly, greater anxiety level was positively associated with a greater number of autism traits and poorer sleep quality regardless of diagnostic group. This suggests that higher anxiety symptoms are a core biomarker of children who often first come to their teacher’s attention with reading and learning difficulties (i.e. “additional needs”), irrespective of the primary cause of school-based problems. (shrink)

Logics for ‘generally’ were introduced for handling assertions with vague notions , which occur often in ordinary language and in science. LG’s provide a framework for distinct notions of ‘generally’: one builds a specific logic for the notion one has in mind. We introduce deductive systems, in natural deduction style, for LG’s and show that these systems are normalizable.

Reconstructive allografts using Vascularized Composite Allotransplantation are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA teams to form, (...) prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented, strategic and interpersonal. Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA. (shrink)

Nas últimas décadas, pode se perceber o aumento dos comportamentos de automutilação na adolescência. Embora isso possa ser explicado pelo crescente interesse de pesquisadores e especialistas em estudo esse fenômeno, é notório que a automutilação não suicida, considerada até recentemente como um comportamento específico inerente a quadros patológicos graves, tem sido utilizada como uma estratégia de enfrentamento mal-adaptativa por um número expressivo de adolescentes pelo menos uma vez na vida ou até mesmo por todo o período da adolescência. Nesta revisão (...) narrativa de educação continuada a automutilação não suicida será discutida em termos de prevalências, funções e fatores associados. Os resultados apontam expressivas prevalências de automutilação não suicida em âmbito mundial, ligada a diversas funções e fatores associados relativos a aspectos sociodemográficos, individuais de manejo de problemas e emoções e psicossociais relacionais. (shrink)

This collection of essays by Sheila Jasanoff explores how democratic governments construct public reason, that is, the forms of evidence and argument used in making state decisions accountable to citizens.

Xenotransplantation - the transfer of living tissue between species - has long been heralded as a potential solution to the severe organ shortage crisis experienced by the United Kingdom and other 'developed' nations. However, the significant risks which accompany this biotechnology led the United Kingdom to adopt a cautious approach to its regulation, with the establishment of a non-departmental public body - UKXIRA - to oversee the development of this technology on a national basis. In December 2006 UKXIRA was quietly (...) disbanded and replaced with revised guidance, which entrusts the regulation of xenotransplantation largely to research ethics committees. In this article we seek to problematize this new regulatory framework, arguing that specialist expertise and national oversight are necessary components of an adequate regulatory framework for a biotechnology which poses new orders of risk, challenges the adequacy of traditional understandings of autonomy and consent, and raises significant animal welfare concerns. We argue for a more considered and holistic approach, based on adequate consultation, to regulating biotechnological developments in the United Kingdom. (shrink)

We discuss the question of inclusions between positive relational terms and some of its aspects, using the form of a dialogue. Two possible approaches to the problem are emphasized: natural deduction and graph manipulations. Both provide sound and complete calculi for proving the valid inclusions, supporting nice strategies to obtain proofs in normal form, but the latter appears to present several advantages, which are discussed.

Effective public health nursing relies on the development of responsive and collaborative relationships with families. While nurse–family relationships are endorsed by home visitation programs, training nurses to follow visit‐to‐visit protocols may unintentionally undermine these relationships and may also obscure nurses’ clinical understanding and situated knowledge. With these issues in mind, we designed a home‐visiting intervention, titled Listening with Care, to cultivate nurses’ relationships with teen mothers and nurses’ clinical judgment and reasoning. Rather than using protocols, the training for the intervention (...) introduced nurses to narrative methods and therapeutic tools. This mixed‐method pilot study included a quasi‐experimental design to examine the effect of the intervention on teen mothers’ depressive symptoms, self‐silencing, repeat pregnancy, and educational progress compared to teens who received usual care. Qualitative data were collected from the nurses to evaluate the feasibility and acceptability of the intervention and therapeutic tools. The nurses endorsed the therapeutic tools and expected to continue using them in their practice. Despite the lack of statistically significant differences in outcomes between groups, findings suggest that further study of the intervention is warranted. Future studies may have implications for strengthening hidden aspects of nursing that make a difference in the lives of teen mothers. (shrink)

We compare fork arrow logic, an extension of arrow logic, and its natural first-order counterpart (the correspondence language) and show that both have the same expressive power. Arrow logic is a modal logic for reasoning about arrow structures, its expressive power is limited to a bounded fragment of first-order logic. Fork arrow logic is obtained by adding to arrow logic the fork modality (related to parallelism and synchronization). As a result, fork arrow logic attains the expressive power of its first-order (...) correspondence language, so both can express the same input–output behavior of processes. (shrink)