Background Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients (...) about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes. Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results The majority of participants were willing to donate embryos for research. Almost half of the donors and half of the recipients considered that a dual consent procedure is desirable. This view was more frequent among employed recipients than among non-employed. Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research and were more frequently favourable to the idea of exclusive donors’ consent. Conclusions Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research. (shrink)

Positive frequency dependent selection is a natural selection regime where the fitness of a phenotype increases with its frequency in the population. Examples can be typically found in the spread of disease tolerance strategies in a population. A characterizing feature of PFDS is that the focal allele may experience favorable selection only when it becomes more frequent in the population, while being selected against when it is rare. In this paper, by applying a solution concept from evolutionary game theory, we (...) hypothesize that the process of emergence of such alleles triggers selection for silence, where the emergence of alleles that can stay unexpressed for a period of time will be favored by selection forces. We illustrate our hypothesis using a mathematical model of a population of single locus diploid organisms with two alleles where a single mutant of an allele that experiences positive frequency dependent selection appears in a population where the other allele is a dominant. The model results show that the longer the silence interval of the new mutant before its expression, the better its chances of getting fixed in the population. However, this effect will be observable only to a certain limit after which further increase in the interval will not have an effect on the expected fixation rate. Two divergences from the simple scenario are also investigated: the nonsynchronous expression of the focal allele and its emergence in a spatial grid limited by a migration bottleneck. In all cases, it is shown that there is an evolutionary pressure inherent in the dynamics of positive frequency dependent selection on the genes to have a delayed expression. It is hypothesized that the regulation systems of such traits will be under selection for either internal silencing mechanisms or to be triggered by an external environmental condition. (shrink)

O envelhecimento populacional é uma preocupação mundial e exige medidas de prevenção de saúde a serem adotadas com a maior brevidade possível. Esse processo é, muitas vezes, acompanhado pelo declínio das habilidades cognitivas, como a memória e as funções executivas. O objetivo do presente estudo é ..

Prison work creates ethical challenges for which a training program was initiated for Dutch prison staff to foster their Moral Craftsmanship (MCS). The concept of MCS is not yet defined and operationalized in literature. This explorative study aims to 1) define MCS, 2) identify conceptual elements of MCS, and 3) develop a measurement tool for MCS. A document and literature study provided input for the definition and selection of conceptual elements related within DCIA policy documents, identifying three conceptual levels of (...) MCS: individual (cognition, attitude, and actions), team, and leadership. This first MCSQ consists of seventy-one items distributed across the domains: values and norms, judgment and reasoning, consultation, implementation, looking back, interactions, and leadership. We tested its usability via ‘think-aloud interviews.’ Validation of the current version of the MCS-Questionnaire and consensus among experts about what to include or exclude in the concept of MCS are needed for further development. (shrink)

Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance.Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers in (...) Netherlands, and to examine the meaning of self-management in managing work-life balance.Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers.Results: Twenty studies that met the inclusion criteria could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty’s, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver.Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro, organizational, and employee level. (shrink)

Automated neuropsychiatric batteries have been used in research and clinical practice, including for chronic diseases, such as Systemic Lupus Erythematosus. The Pediatric Automated Neuropsychological Assessment Metrics battery, originally developed for use in American-English speaking individuals, allows tracking of cognitive functions. It can be applied to people over 9 years old. The aim of this study was to translate and present initial validation data from the Ped-ANAM into Brazilian-Portuguese. We translated the battery according to Beaton’s guidelines. Psychometric properties were tested, internal (...) consistency was analyzed by Cronbach’s alpha coefficient, test-retest reliability by the intraclass correlation coefficient. Further, we measured the test execution speed at both times as a temporal stability. Principal component analysis was used for structural validity. Evidence of construct validity was assessed through assessment of the relationships with the Wechsler Intelligence Scales. All participants prior to the start of study related activities signed an informed consent form approved by the local ethics committee. A sample of 230 individuals [mean of age: 23 years; 65% females] was included; a subset of 51 individuals [mean of age: 18 years, 59% female] completed the Ped-ANAM twice to assess test-retest reliability, and another subset of 54 individuals [mean of age: 20.4 years; 67% female] completed the Wechsler Intelligence Scales for Children and Adult for assessment of the Ped-ANAM’s construct validity. Our results suggest that the internal consistency of the Ped-ANAM and its subtest test-retest reliability were excellent. There was no clustering in the Principal Components Analysis, suggestive of non-grouping of the evaluated variables. Construct validity assessment to the Wechsler Scales showed expected ranges of low to strong correlations. We concluded that, based on the results of this study, a cross-culturally validated Brazilian-Portuguese version of the Ped-ANAM has been developed and it is a reliable tool for the screening cognitive function. (shrink)

Building on the long-standing tradition of challenging oppression and questioning whose interests are being served in the field of language education, we report on a study that involved a group of U.S.-based graduate students who collaborated with a ninth-grade English teacher in Nepal. The study comes out of a larger project that sought to internationalize the curriculum of a graduate educational linguistics course at a U.S. university. At the heart of this internationalizing curriculum endeavour was a commitment to expose graduate (...) students in the U.S. to the issues of language teaching outside of the U.S. This was done through co-designing of a unit of lessons, with six graduate students meeting virtually with their teacher partner, Ditya, in Nepal over the course of a semester. The graduate students and Ditya constitute our research participants. The graduate student participants learned about the need to develop pedagogical materials that were relevant to the local context in Nepali classroom, and not attempt to transplant a Western-centric curriculum onto the Nepali classroom. In keeping with recent calls to decolonize higher education, we illustrate how critical theory in general and decolonizing pedagogy in particular can be infused into a U.S. graduate curriculum by drawing on the rich, indigenous knowledge and resources of a teacher collaborator from the Global South. We do this by reporting how this critical, decolonizing goal was realized through collaborative professionalism, which is characterized by the sharing of knowledge, skills, and experience to improve student achievement, reflection, dialogue and collective responsibility. (shrink)

Childhood obesity, linked to a sedentary lifestyle and an unbalanced diet, is one of the main problems in today’s Western societies. In this sense, the aim of the study was to analyze students’ perceived satisfaction in physical education classes with learning strategies and engagement in learning and critical thinking as determinants of healthy lifestyle habits. The study involved 2,439 high school students aged 12–18 years (M= 14.66,SD= 1.78). Structural equation modeling was conducted to analyze the predictive relationships between the study (...) variables. The results showed that teaching, teaching mastery, and cognitive development are precursors to deep thinking on the part of students, indicators of the adoption of healthy lifestyle habits. These results reflect the importance of the methodology adopted by the teacher in order to positively influence the students’ habits. (shrink)

En los últimos 20 años el debate entre los Factores Comunes y los Tratamientos con Apoyo Empírico (TAE) ha sido uno de los más relevantes para la práctica clínica. El enfoque TAE con origen en la investigación sobre fármacos (Medicina Basada en la Evidencia), promueve el uso de técnicas específicas y protocolos de tratamiento. Los Factores Comunes, por el contrario, señalan la validez de múltiples psicoterapias, la cual estaría basada en dimensiones comunes a todo tratamiento, y no tanto en el (...) uso de técnicas específicas. El proceder médico y farmacológico encaja razonablemente dentro de un marco de acción instrumental, en el que el acto sanitario se ejerce a fin de modificar ciertos parámetros fisiológico-anatómicos. Pero la psicoterapia es mejor entendida como una relación entre sujetos, ya que el paciente, el objeto de la acción terapéutica, es también un sujeto, y no un parámetro. Por ello los protocolos como secuencias prefijadas de acciones del terapeuta (ideal para la investigación por su replicabilidad y pertinencia metodológica), implican una suerte de eliminación del sujeto. Cabe entonces entender el sentido de los protocolos de tratamiento como marcos de sentido, de problemas pertinentes, de soluciones indicadas. Como una forma de conocimiento flexible sobre el problema y su funcionamiento y manejo. (shrink)

Part 10: The very old man and the sea of tears‘There is no time to waste, then, is there?' ‘He needs to be treated.’‘But he is 79 years old.’Two doctors in conflict. As happens often. The subject of the conversation is Mr Tyson, admitted to the hospital because of an aneurysm in his abdomen. Sarah Walters said ‘treat’. ‘Nonsense, too old, too risky’ is the opinion of Dr Jones. The squabble continues.Sarah: ‘So what? Does old age exclude you from society? (...) Of course we have to treat him.’‘But the investment will only last for a few years, and think of the risks, he may die from the operation. He should go home and, well, live what there is to live.’She shakes her head, her hair giving her a red aura. ‘I think he ought to have the operation.’‘I think it would be best if he should accept that time is running out, that life is finite, the whole existential rigmarole, et cetera.’‘Quite presumptuous of you to think he has not accepted that. Why? Just because he is old and did not kill himself?’ Sarah is indignant. ‘If he had done just that, we would have lamented about how we do not take care of our elderly, that society doesn't care, and that certainly there is no right to die unless your situation is totally hopeless and you're in a lot of pain. It doesn't make sense; in public health one does everything to increase life expectancy. Countries are proudly comparing themselves on the life expectancy list: mine is longer than yours. We worry because people have these unhealthy lifestyles, they are obese, they smoke, they get no exercise and they live a couch potato life. And then, lo and behold, they do grow old, in fact, and we go: …. (shrink)

The central idea of this “article” is that certain developments such as extreme simplification, the politicisation of medical ethics, the “normative industry” and “empirethics”, may seriously threaten the (future) practice of medical ethics.