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Background Little is known about volunteers from Northern research settings who participate in vaccine trials of highly infectious diseases with no approved treatments. This article explores the motivations of HIV immunocompromised study participants in Canada who volunteered in a Phase II clinical trial that evaluated the safety and immunogenicity of an Ebola vaccine candidate. Methods Observation at the clinical study site and semi-structured interviews employing situational and discursive analysis were conducted with clinical trial participants and staff over one year. Interviews were recorded, transcribed and analysed using critical qualitative interpretivist thematic analytical techniques. Patterns were identified, clustered and sorted to generate distinct and comprehensive themes. We then reassembled events and contexts from the study participants’ stories to develop two ideal portraits based on "composite characters" based on study participants features. These provide ethnographically rich details of participants’ meaningful social worlds while protecting individual identities. Results Ten of the 14 clinical trial participants, and 3 study staff were interviewed. Participant demographics and socio-economic profiles expressed limited contextual diversity. Half were men who have sex with men, half were former injection drug users experiencing homelessness, one was female, none were racialized minorities and there were no people from HIV endemic countries. Fully 90% had previous involvement in other clinical studies. Their stories point to particular socio-economic situations that motivated their participation as clinical labor through trial participation. Conclusions Our findings support Fisher’s argument of “structural coercion” in clinical trial recruitment of vulnerable individuals experiencing precarious living conditions. Clinical trials should provide more detail of the structural socio-economic conditions and healthcare needs which lie “under consent” of study participants. Going well beyond an overly convenient narrative of altruism, ethical deliberation frameworks need to sufficiently address the structural conditions of clinical trials. We offer concrete possibilities for this and acknowledge that further research and clinical data should be made available underlying study participant contexts with regards to recruitment and participation in resource poor settings, in both the South and the North.

Background Under COVID-19 pandemic, many organizations developed guidelines to deal with the ethical aspects of resources allocation. This study describes the results of an argument-based review of ethical guidelines developed at the European level. It aims to increase knowledge and awareness about the moral relevance of the outbreak, especially as regards the balance of equity and dignity in clinical practice and patient’s care. Method According to the argument-based review framework, we started our research from the following two questions: what are the ethical principles adopted by the ethical guidelines produced at the beginning of the COVID-19 outbreak related to resource allocation? And what are the practical consequences in terms of 'priority' of access, access criteria, management of the decision-making process and patient care? Results Twenty-two ethical guidelines met our inclusion criteria and the results of our analysis are organized into 4 ethical concepts and related arguments: the equity principle and emerging ethical theories; triage criteria; respecting patient’s dignity, and decision making and quality of care. Conclusion Further studies can investigate the practical consequences of the application of the guidelines described, in terms of quality of care and health care professionals’ moral distress.

Background Gene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the academic literature. Methods In this qualitative study, we interviewed GDT experts (n = 33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically. Results The respondents’ moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials (‘risks of intervention’ stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo (‘risks of non-intervention’ stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies (‘downstream solutions’ stance) or systematic changes to health care, political and agricultural systems (‘upstream solutions’ stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans’ role in nature (‘interference’ stance) or not (‘non-interference stance’). Conclusions This interview study helps to disentangle the debate on GDTs by providing a better understanding of the moral views of GDT experts. The obtained insights provide valuable stepping-stones for a constructive debate about underlying value conflicts and call attention to topics that deserve further (normative) reflection. Further evaluation of these issues can facilitate the debate on and responsible development of GDTs.

BackgroundThe biopharmaceutical industry operates at the intersection of life sciences, clinical research, clinical care, public health, and business, which presents distinct operational and ethical challenges. This setting merits focused bioethics consideration to complement legal compliance and business ethics efforts. However, bioethics as applied to a biopharmaceutical industry setting often is construed either too broadly or too narrowly with little examination of its proper scope.Main textAny institution with a scientific or healthcare mission should engage bioethics norms to navigate ethical issues that arise from the conduct of biomedical research, delivery of clinical care, or implementation of public health programs. It is reasonable to assume that while bioethics norms must remain constant, their application will vary depending on the characteristics of a given setting. Context “specification” substantively refines ethics norms for a particular discipline or setting and is an expected, needed and progressive ethical activity. In order for this activity to be meaningful, the scope for bioethics application and the relevant contextual factors of the setting need to be delineated and appreciated. This paper defines biopharmaceutical bioethics as:the application of bioethics norms (concepts, principles, and rules) to the research, development, supply, commercialization, and clinical use of biopharmaceutical healthcare products. It provides commentary on this definition, and presents five contextual factors that need to be considered when applying bioethics norms to a biopharmaceutical industry setting: (1) dual missions; (2) timely and pragmatic guidance; (3) resource stewardship; (4) multiple stakeholders; and (5) operational complexity.ConclusionUnderstanding the scope of the biopharmaceutical enterprise and contextual factors of a biopharmaceutical industry setting is foundational for the application of bioethics norms. Establishing a common language and approach for biopharmaceutical bioethics will facilitate breadth and depth of discussion and subsequent implementation to benefit patients, the healthcare system and society.

Background Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results. Results 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.

Este estudo tem o objetivo de refletir sobre a saúde materna em Moçambique tendo como ponto central a discussão se as taxas de cesárea nessa população podem ser utilizadas como um indicador de saúde. A justificativa para este estudo parte da premissa que as fragilidades no setor de saúde pública de Moçambique levam ao aumento da realização de cesáreas evitáveis, principalmente, durante a assistência emergencial de mulheres em situação de vulnerabilidade, como exposto na mídia. O material de análise envolve os documentos oficiais do Ministério da Saúde de Moçambique e da Organização Mundial da Saúde. Conclui-se que não existem argumentos para que se tente atingir uma determinada taxa de cesáreas, e sim priorizar o atendimento pré-natal, abrangendo toda a região do país, em especial, para as comunidades mais pobres e que vivem em regiões afastadas dos centros de saúde.

Background Respect for patients’ autonomy is usually considered to be an important ethical principle in Western countries; privacy is one of the implications of such respect. Healthcare professionals frequently encounter ethical dilemmas during their practice. The past few decades have seen an increased use of courts to resolve intractable ethical dilemmas across both the developed and the developing world. However, Chinese and American bioethics differ largely due to the influence of Chinese Confucianism and Western religions, respectively, and there is a dearth of comparative studies that explore cases of ethical dilemmas between China and the United States. Methods This paper discusses four typical cases with significant social impact. First, it compares two cases concerning patient privacy: the “Shihezi University Hospital Case”, in which a patient was used as a clinical teaching object without her permission, and the “New York-Presbyterian Hospital Case”, in which the hospital allowed the filming of a patient’s treatment without his consent. Second, it compares two cases regarding patient autonomy and potentially life-saving medical procedures: the “Case of Ms. L”, concerning a cohabitant’s refusal to sign a consent form for a pregnant woman’s caesarean, and the “Case of Mrs. V”, concerning a hospital’s insistence upon a blood transfusion for a dissenting patient. This paper introduces the supporting and opposing views for each case and discusses their social impact. It then compares and analyses the differences between China and the United States from cultural and legislative perspectives. Conclusions Ethical dilemmas have often occurred in China due to the late development of bioethics. However, the presence of bioethics earlier in the US than in China has not spared the US of ethical dilemmas. This paper highlights lessons and inspiration from the cases for healthcare professionals and introduces readers to the role and weight of privacy and autonomy in China and in the US from the perspectives of different cultures, religions and laws.

La enfermedad terminal implica el aporte de cuidados paliativos que permitan la mejora de la calidad de vida. Entre los cuidados, la alimentación (enteral o parenteral) juega un papel importante que está influenciado por la interrelación entre biopolítica, bioética y biopoder y sus mecanismos para garantizar una adecuada equidad y justicia social.

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA (EXCEED) longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study.

Background Burn patients are among the most vulnerable groups of patients requiring principled ethical care. Caring for these patients often brings various ethical challenges for the members of the health care teams, especially nurses, which affect the clinical decisions made for these patients. A limited number of studies have addressed the ethical challenges of caring for burn patients for the responsible caregivers, so the present study attempted to identify these challenges. The present study aimed to explore the health professionals' experiences of the ethical challenges during caring for burn patients. Methods This was a qualitative study with a descriptive, phenomenological design. 22 health professional practiced in public burn centers in Iran who met the inclusion criteria of the study were selected via purposeful sampling to participate in the study from June to August 2019. Data were collected using semi-structured, in-depth interviews with the individuals as well as field notes. Sampling was continued up to the data saturation. Thereafter, the collected data were analyzed using Colaizzi's method. Results The findings of the study yielded 3 themes, including respect for the patient's privacy, respect for the patient's personal identity, and care challenges, as well as 9 categories. Conclusion The findings of this study showed that the burn patients’ caregivers face some challenges in the domains of maintaining the patient's privacy, respecting the patient’s personal identity, and making the best clinical decision. Thus, providing the cultural, professional, and organizational requirements of meeting the challenges of caring for burn patients can consequently result in the caregivers’ inner peace and the improved performance.

El panorama interdisciplinar de los últimos 40 años pretende facilitar y promover la integración de conocimientos y la coordinación de esfuerzos de distintas disciplinas implicadas en el área de la salud. La salud es un componente básico de la calidad de vida y bajo este marco se deben contemplar, principalmente, tres significados relevantes: por un lado, el descriptivo que es aquello que convierte a una persona en una entidad concreta, individualizándola y diferenciándola de los demás seres. El segundo significado está basado en el aspecto cuantitativo, medible por indicadores objetivos; y, finalmente, el significado ético, de respeto a la vida. En general, la salud va unida comúnmente con el bienestar, protección y progreso social. Esta conexión se descompensa, desequilibra o se rompe cuando aparecen realidades como las propias enfermedades raras o poco frecuentes. La OMS, en este sentido, recoge cinco grandes bloques de factores intervinientes, principalmente, socioeconómico, estado patológico, tratamiento, sistema de salud y entidad individual del paciente o afectado. El hecho de enfermar y, especialmente, con una patología poco frecuente debe conllevar necesariamente la comprensión de la misma y su proceso no puede formalizarse de una manera simple y unívoca. Su diagnóstico y abordaje han de estar fundados en perspectivas pluridimensionales y diferenciadas, en concreto, biológica, psicológica, social y asistencial; y, todas ellas han de ser integradoras, sistémicas.

Las personas con discapacidad intelectual son personas con sus limitaciones, pero dotadas de otras capacidades que sí les posibilitan cierto nivel de autogestión en la vida diaria. Necesitan una suficiente cobertura legal y apoyos proporcionados que faciliten su crecimiento personal y su proceso hacia la plena inclusión. El acompañamiento adecuado a su nivel cognitivo prestado tanto por los profesionales como desde el entorno familiar y social son fundamentales para la realización de su proyecto vital. Felicidad y discapacidad no son incompatibles para la persona que se siente suficientemente valorada y apoyada.

A pandemia causada pelo novo coronavírus intensificou debates acerca do direito à vida e à saúde, descortinando desigualdades e denunciando a carência de recursos e de direitos sociais básicos. O artigo pretende estimular a reflexão bioética sobre a atual pandemia, tendo como eixo de discussão o tema da solidariedade. Trata-se de uma revisão narrativa com acesso às principais bases de dados. Os achados apontam que em meio aos tempos de crise e incerteza, a solidariedade desponta como um princípio ético com potencial de intensificar a ajuda humanitária e as redes de apoio, no enfrentamento das vulnerabilidades.

Los apoyos de las familias a sus integrantes con discapacidad intelectual se expresan de diferentes modos, principalmente en cuidados personales y ayuda en la toma de decisiones a lo largo de la vida. Ante esta necesidad de colaboración, se ha planteado como interrogante en varios instrumentos internacionales si esta confluencia no daría lugar a una sustitución de la voluntad en lugar de constituir un apoyo. Aquí se propone como hipótesis que, en los casos de una deficiencia cognitiva significativa, se produce una inevitable comunión entre voluntades. No se trataría entonces propiamente de una sustitución, sino de un apoyo activo en aspectos vitales trascendentes.

espanolSe suelen entender los derechos humanos como una especie de poder ilimitado individual al que se puede apelar permanentemente, pero un derecho siempre esta limitado. Durante una emergencia sanitaria con recursos finitos e insuficientes los derechos de diferentes personas entran necesariamente en conflicto. El debate en torno a la carga desproporcionada en materia de ajustes razonables en las actuaciones de accesibilidad guarda paralelismo con la justificacion de un proceso de triaje en caso de recursos sanitarios limitados. En cualquier caso debe entenderse que una carga es desproporcionada solamente en la medida en que lesione un bien protegido juridicamente superior. EnglishHuman rights are often understood as a kind of unlimited individual power that can be permanently appealed to, but a right is always limited. During a health emergency where there are finite and insufficient resources, the rights of different people enter into conflict. The debate on the disproportionate burden of reasonable adjustments in accessibility actions parallels the justification of a triage process when health resources are limited. In any case, it should be understood that a burden is disproportionate only to the extent that it damages a legally superior protected asset.

espanolEl reconocimiento de la persona con discapacidad como sujeto de derechos y el desarrollo de un marco de cuidado integral son grandes hitos que han marcado las ultimas decadas. A pesar de estos claros avances, la dimension afectivo-sexual sigue presentando dificultades, tanto en su reconocimiento como en su abordaje. La reflexion etica y elaboracion de unas recomendaciones eticas pretenden ofrecer una orientacion general a los profesionales, ayudando a identificar los propios valores, reconocer los valores de las personas atendidas, fomentar el dialogo y debate, asi como las posibles situaciones de riesgo o de alerta, promoviendo actitudes basadas en el respeto. EnglishThe acknowledgement of the rights of persons with disabilities and the development of a comprehensive framework of care have been two great milestones of the last decades. However, and in spite of these clear advances, the affective-sexual dimension continues to present difficulties, both with regard to its recognition and the approach taken. This ethical reflection and creation of ethical recommendations seeks to offer a general perspective to professionals, helping them to identify their own values, to recognize the values of the people aided, to promote dialogue and discussion, as well as to identify and spread awareness of possible situations of risk, thereby promoting attitudes based on respect.

espanolEste articulo reflexiona sobre el horizonte del modelo social al pensar la inclusion educativa desde una etica que atienda a la diversidad, a los derechos que garanticen la no violencia, la dignidad y el respeto, observando la alteridad interpelada desde la discapacidad intelectual. Pensar un ethos inclusivo y los aportes que puede compartir con la bioetica, para agotar el paradigma de deficit que sigue impidiendo la mirada abierta al Otro levinasiano para una educacion inclusiva. EnglishThis article reflects on the limits of the social model when we think of educational inclusion from the perspective of ethics related to diversity, of rights that guarantee non-violence, dignity and respect, considering the assumed otherness of intellectual disability. We reflect on an inclusive ethos and the contributions that may be shared with Bioethics, in order to eliminate the idea of “deficit” that continues to prevent an open look at the Levinasian concept of Otherness for an inclusive education.

Background Fecal microbiota transplant (FMT) is a treatment modality that involves the introduction of stool from a healthy pre-screened donor into the gastrointestinal tract of a patient. It exerts its therapeutic effects by remodeling the gut microbiota and treating microbial dysbiosis-imbalance. FMT is not regulated in Jordan, and regulatory effort for FMT therapy in Jordan, an Islamic conservative country, might be faced with unique cultural, social, religious, and ethical challenges. We aimed to assess knowledge, attitudes, and perceptions of ethical and social issues of FMT use among Jordanian healthcare professionals. Methods An observational, cross-sectional study design was used to assess knowledge, attitudes, and perceptions of ethical and social issues of FMT among 300 Jordanian healthcare professionals. Results A large proportion (39 %) thought that the safety and efficacy of this technique are limited and 29.3 % thought there is no evidence to support its use. Almost all (95 %) responded that they would only perform it in certain cases, if ethically justified, and 48.3 % would use it due to treatment failure of other approaches. When reporting about reasons for not using it, 40 % reported that they would not perform it due to concerns about medical litigation, fear of infections (38 %), and lack of knowledge of long safety and efficacy (31.3 %). Interestingly, all practitioners said they would perform this procedure through the lower rather than upper gastrointestinal tract modality and the majority will protect the patient’s confidentiality via double-blinding (43.3 %). For a subset of participants (n = 100), the cultural constraints that might affect the choice of performing FMT were mainly due to donor’s religion, followed by dietary intake, and alcohol consumption. Conclusions Our healthcare practitioners are generally reluctant to use the FMT modality due to religious and ethical reasons but would consider it if there was a failure of other treatment and after taking into consideration many legislative, social, ethical and practice-based challenges including safety, efficacy and absence of guidelines.

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates ofN = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

Background Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and health-related data for observational research. Methods We conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues. Results Sudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives. Conclusions Sudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.

Suppose you are a moral error theorist, i.e., you believe that no moral judgment is true. What, then, ought you to do with regard to our common practice of making such judgments? Determining the usefulness of our ordinary moral practice is exacerbated by the great number and variety of moral judgments. In-depth case studies may thus be more helpful in clarifying error theory’s practical im- plications than reflections about morality in general. In this article, I pursue this strategy with regard to a particularly important matter, namely climate change. First, I establish general conditions for when a moral judgment has any effect on those who accept it. Second, I show that the judgment that individuals in industrialized countries are morally obliged to act against climate change does not fulfill these conditions, and is thus neither beneficial nor harmful. Finally, I sketch several strategies for increasing people’s non-moral motivation to act against climate. This is the polish translation of book chapter by Thomas Pölzler, „The Effects of Morality on Acting against Climate Change,” published in: The End of Morality: Taking Moral Eliminativism Seriously, ed. Richard Garner, Richard Joyce, New York: Routledge 2018.

It is a fact that misleading communication is one of the factors that threaten food safety. With the widespread use of social media, this threat is increasing its influence gradually. In particular, statements of non-experts against scientific ethics mislead the society on food. This phenomenon adversely affects the producer, processor and consumer on the one hand, and the national economy on the other. To mitigate these effects, a prohibitive approach seems to have come to the fore. However, the most effective way to prevent these adverse effects is to create an evidence-based discussion environment within the scope of media ethics and to include every opinion within the scope of scientific ethics. It is also necessary to provide reliable information to the public from an independent and impartial scientific committee.

As Robert Toovey Walker notes, the multidimensional catastrophe is going to happen in 2064. The main aim of an article is to justify the standpoint that environmental and climate changes are so much calamitous its force some mod-ifi cations of native educational system, in the direction of reinterpretated envi-ronmental ethics anew. The necessity eventuates from – experienced by us – an ecological-social collapse which has got a deeper moral strand and which char-acterises modern age, called Anthropocene. In this strand one is able to observe an ubiquitous lethargy and social indiff erence to happening catastrophe, as well as to the lack of systemwide, governmental activities, that could reduce for ex-ample emission of carbon dioxide, devastation of water ecosystems or deforest-ation of green areas. Present article endeavours to answer the question how to adjust traditional, deeply anthropocentric ethical thought in order to safe next generations against some consequences of an actual lack of climate responsibil-ity as well as a lack of cross-generational and interspecies equity.

The article discusses two books that make an interesting contribution to the development of ethical refl ection on the relationship between humans and an-imals. These are: Face to face with animals. Levinas and Animal question edited by Peter Atterton and Tamara Wright, whose authors, followers of the French philosopher Emmanuel Levinas, address the ethical status of animals in the 168BŤŵťŤŵŤ NŬŨŧȌźŬŨŧŽŮŤlight of the “Other” and “Face” concepts, and the book: Ethical Condemnation of Hunting edited by Dorota Probucka – a collection of essays exposing myths, lies and pathologies accompanying the killing of animals for sport or entertain-ment. The authors of both collections of essays draw attention to the reasons and mechanisms for excluding animals from the sphere of philosophical refl ec-tion and human morality and give strong arguments for restoring their proper ethical status.

We access our foods through agricultural and food systems. These systems encompass all elements and activities related to production, processing, storage, distribution, preparation, sale and consumption of foods as well as relevant socio-economic and environmental impacts. The safety and wholesomeness of foods have always been extremely important for consumers. Furthermore, in recent years, ethical issues in agricultural and food systems have become a new area of interest for consumers. Ethical principles determine values or virtues related to personal and professional behavior, social behavior and responsibilities towards society. Agricultural and food ethics must be effectively considered at all stages from farm to fork: food production, processing, marketing and consumption. There are significant inequalities around the World, especially in terms of access to food. In this review, basic ethical problem areas and respective ethical approaches in food production and food safety are reviewed.

Background The perception of organ donation and brain death among Syrian population has not been previously explored. The goal of this study is to evaluate the attitude and knowledge of organ donation among Syrians and the willingness of this population to donate their organs. Methods We conducted a survey-based cross-sectional study in four hospitals in Aleppo, Syria in November 2019. Patient demographic, awareness of brain death; and attitude toward organ donation were collected and analyzed. Results A total of 350 individuals were invited to participate in the survey among whom 303 (197 females, 106 males) agreed to participate in the study (87% response rate). The majority of our participants (n = 249, 82%) heard about organ donation with television (n = 166, 55%), social media (n = 77, 25%), and the internet (n = 77, 25%) being the most common sources of information. When assessing knowledge about brain death, only 40% (n = 116) answered 3 or more questions (out of 5) correctly. Fifty-eight percent (n = 176) of respondents agreed with the idea of organ donation and 183 (62%) would like to donate their organs one day. The leading motivation to organ donation was the desire to help (n = 234, 77%), while the most common reason to refuse donation was the refusal to disfigure a dead body by removing an organ (n = 125, 41%). Religious reasons were cited as motivation for organ donation by 43% of participants (n = 130), and a reason for refusing to donate organs by 24% (n = 71). Most respondents (n = 261, 88%) were unaware of the laws and legislations related to organ donation in Syria. When asked if religion and law were encouraging organ donation, 76% of respondents (n = 226) would donate their organs. Although more positive attitude was found in those with better brain death knowledge (score ≥ 3), this did not translate into more willingness to donate organs in this group of participants. Conclusions The promotion of organ donations from deceased donors is a necessity given the rising shortage of organs. The information provided by this study could help policy makers build future strategies to promote deceased organ donation programs and overcome current obstacles preventing such initiatives from achieving their goals.

In 2016, the World Innovation Summit for Health (WISH) published its Forum Report on precision medicine “PRECISION MEDICINE - A GLOBAL ACTION PLAN FOR IMPACT”. Healthcare is undergoing a transformation, and it is imperative to leverage new technologies to generate new data and support the advent of precision medicine (PM). Recent scientific breakthroughs and technological advancements have improved our disease knowledge and altered diagnosis and treatment approaches resulting in a more precise, predictive, preventative and personalized health care that is customized for the individual patient. Consequently, the big data revolution has provided an opportunity to apply artificial intelligence and machine learning algorithms to mine such a vast data set. Additionally, personalized medicine promises to revolutionize healthcare, with its key goal of providing the right treatment to the right patient at the right time and dose, and thus the potential of improving quality of life and helping to bring down healthcare costs. This policy briefing will look in detail at the issues surrounding continued development, sustained investment, risk factors, testing and approval of innovations for better strategy and faster process. The paper will serve as a policy bridge that is required to enhance a conscious decision among the powers-that-be in Qatar in order to find a way to harmonize multiple strands of activity and responsibility in the health arena. The end goal will be for Qatar to enhance public awareness and engagement and to integrate effectively the incredible advances in research into healthcare systems, for the benefit of all patients. The PM policy briefing provides concrete recommendations on moving forward with PM initiatives in Qatar and internationally. Equally important, integration of PM within a primary care setting, building a coalition of community champions through awareness and advocacy, finally, communicating PM value, patient engagement/empowerment and education/continued professional development programs of the healthcare workforce. Key recommendations for implementation of precision medicine inside and outside Qatar: Create Community Awareness and PM Education Programs Engage and Empower Patients Communicate PM Value Develop appropriate Infrastructure and Information Management Systems Integrate PM into standard Healthcare System and Ensure Access to Care PM is no longer futuristic. It is here. Implementing PM in routine clinical care does require some investment and infrastructure development. Invariably, cost and lack of expertise are cited as barriers to PM implementation. Equally consequential, are the curriculum and professional development of medical care experts. Policymakers need to lead and coordinate effort among stakeholders and consider cultural and faith perspectives to ensure success. It is essential that policymakers integrate PM approaches into national strategies to improve health and health care for all, and to drive towards the future of medicine precision health.

Background The Authors have laid out an analysis of Italian COVID-19 confirmed data and fatality rates, pointing out how a dearth of health care resources in northern regions has resulted in hard, ethically challenging decisions in terms of granting patient access to intensive care units (ICU). Main text Having to make such decisions certainly entails substantial difficulties, and that has led many health care professional to seek ethical guidance. The Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI) has attempted to meet that growing need by a set of recommendations, applying “clinical soundness” as a beacon standard; that approach tends to prioritize patients with higher life expectancy, which could be characterized as a “moderately utilitarian” approach. Yet, such a selection has engendered daunting ethical quandaries. The authors believe it can only be warranted and acceptable if rooted in a transparent decision-making process and verifiable, reviewed criteria. Moreover, the authors have stressed how clinical experimentation in a pandemic setting is a subtext of great interest from an ethical perspective. In Italy, no drug therapy and trials were undertaken for COVID-19 patients for a rather long period of time. When the epidemic was already circulating, an intervention proved necessary on the system of administrative procedures, aimed at expediting the authorization and validation of protocols, then bogged down by bureaucracy. A new system has since been instituted by a government decree that was signed about one month after the first Covid-19 case was officially recorded in the country. Such a swift implementation, which took just a few weeks, is noteworthy and proves that clinical trials can be initiated in a timely fashion, even with a pandemic unfolding. The concerted, action of supportive care and RCTs is the only way to attain effective forms of treatments for COVID-19 and any other future outbreak. Conclusions The authors have arrived at the conclusion that the most effective and ethically sound response on the part of any national health care system would be to adequately reconfigure its organizational mechanisms, by making clinical trials and all related administrative procedures consistent with the current state of emergency.

BackgroundExpanded access is the use of investigational drugs (IDs) outside of clinical trials. Generally it is performed in patients with serious and life-threatening diseases who cannot be treated satisfactorily with authorized drugs. Legal regulations of expanded access to IDs have been introduced among others in the USA, the European Union (EU), Canada and Australia. In addition, in the USA an alternative to expanded access is treatment under the Right-to-Try law. However, the treatment use of IDs is inherently associated with a number of ethically relevant problems.Main textThe objective of this article is to present a coherent framework made up of eight requirements which have to be met for any treatment use of an ID to be ethical. These include a justified need for the use of an ID, no threat to clinical development of the ID, adequate scientific evidence to support the treatment, patient’s benefit as the primary goal of the use of an ID, informed decision of a patient, fair access of patients to IDs, independent review, as well as the dissemination of treatment results.ConclusionsWhile this framework is essentially consistent with the legal regulations of expanded access of the USA, the EU, Canada and Australia, it is substantially wider in scope because it addresses some important issues that are not covered by the regulations. Overall, the framework that we developed minimizes the risks and threats, and maximizes potential benefits to each of the four key stakeholders involved in the treatment use of IDs including patients, doctors, drug manufacturers, and society at large.

espanolA partir de la interpretacion del pensamiento de Norman Daniels sobre la asistencia sanitaria como exigencia para el funcionamiento normal de la especie humana, se analiza la cuestion del racionamiento sanitario aplicandolo al contexto de la pandemia de la COVID-19 en Mozambique, un sistema sanitario que se debate con la extrema escasez de recursos sanitarios. La lucha contra el Sars-cov-2 ha provocado desatencion a las enfermedades que constituyen un problema de salud publica. Ello nos obliga a reflexionar sobre la justicia distributiva en el contexto de la asistencia sanitaria. EnglishBased on Norman Daniels’ interpretation of healthcare as a requirement for the normal functioning of the human species, we analyse healthcare rationing by applying it to the COVID-19 pandemic in Mozambique, a healthcare system that has scant resources. The fight against Sars-cov-2 has led to neglecting diseases that constitute a public health problem. This forces us to reflect on distributive justice within the context of healthcare.

EnglishAlthough science and biotechnoscience are meant to protect lives, they can also pose risks to survival. We fear them at the same time that we reap their benefits, possibly because here in Brazil and all over the world we are living through a sombre period assailed by the uncertainties of “the biopolitics of death”, or what we call “necropolitics”. This paper performs a critical review of the current literature in an attempt to reflect on the relationship between science, biotechnoscience, biopolitics and bioethics. This will hopefully contribute to a clear perception of the effects of a “science without conscience”, and of the need to build biotechnoscience in response to social demands in times of COVID-19. portuguesA ciencia e a biotecnociencia que, a principio, protegem as vidas, tambem pode gerar riscos as suas sobrevivencias. Ao mesmo tempo em que desejamos as benesses de ambas, tambem as tememos, talvez pelo fato de que no Brasil e no mundo, vivemos tempos sombrios, marcados pelas incertezas de uma “biopolitica da morte” ou “necropolitica”. A revisao critica de literatura aqui proposta, tem como escopo refletir sobre a relacao entre a ciencia, a biotecnociencia, a biopolitica e a bioetica, contribuindo para uma percepcao clara, tanto dos efeitos de uma “ciencia sem consciencia”, como da necessidade de construcao de uma biotecnociencia, que atenda as demandas sociais em tempos de COVID-19.

espanolLas razones por las cuales el programa Health 2020 de la Oficina Europea de la OMS incluyo en 2012 el fortalecimiento de la resiliencia entre sus cuatro prioridades se han vuelto dramaticamente evidentes en nuestros esfuerzos diarios para enfrentar la pandemia provocada por la COVID-19. La resiliencia se configura ademas como un requisito previo fundamental no solo para la promocion de la salud, sino para el cumplimiento de la Agenda 2030 y los ODS en su conjunto. La resiliencia nos brinda oportunidades para un cambio positivo, ambientalmente sostenible y duradero ante la cambiante realidad que nos rodea. EnglishThe reasons why the WHO European Office's Health 2020 programme included strengthening resilience among its top four priorities in 2012 have become dramatically evident, as we make daily efforts to tackle the COVID-19 pandemic. Resilience is also established as a fundamental prerequisite not only to boost health but also to fulfil the 2030 Agenda and the SDGs as a whole. Resilience provides us with opportunities for positive, environmentally sustainable, and lasting change in the face of the changing reality that surrounds us.

Background Social media has globalised compassion enabling requests for donations to spread beyond geographical boundaries. The use of social media for medical crowdfunding links people with unmet healthcare needs to charitable donors. There is no doubt that fundraising campaigns using such platforms facilitates access to financial resources to the benefit of patients and their caregivers. Main text This paper reports on a critical review of the published literature and information from other online resources discussing medical crowdfunding and the related ethical questions. The review highlighted the benefits of crowdfunding as well as the under-exploration of the risk of having patients’ desires and human rights undermined during online fundraising campaigns. Majority of these campaigns get initiated on behalf of the patients, especially the very sick and dependant. The ethical questions raised relate to the voluntariness of informed consent and the possibility of patients being used as a means to an end. Vulnerability of patients may expose them to coercion, undue influence, manipulation, and violation of their human rights. The success of these campaigns is influenced by the digital skills, pre-existing social networks and, the emotional potency. Healthcare is a public good, and online market forces should not determine access to essential health services. The benefits of crowdfunding cannot be subverted, but it can perpetuate unintended injustices, especially those arising from socio-economic factors. Conclusions Policymakers ought to monitor the utilisation of crowdfunding sites to identify policy failures and unmet essential health care needs responsible for driving individuals to use these platforms. The upholding of human rights and the fundamental respect of the individual’s wishes is a moral imperative. The need for an ethics framework to guide different stakeholders during medical crowdfunding needs further examination.

INTRODUCTION[|]What would you do if given the task of implementing a sustainable agriculture model that is sensitive to nature and the environment and ensures safe food production, but have no authority to do so? If you had to farm to survive, would you produce food separately for your family using no chemicals while employing intensive plant-protective chemicals in your production for others? Would you be willing to buy less fertilizer and fewer crops to protect the soil for future generations? Would you give up on industrial animal husbandry, which sees animals as meat and milk-producing machines, because animals have rights, too? Would you continue intensive agriculture based on single-crop production at the expense of affecting the biodiversity that is vital for agriculture and food? Would you choose a healthier production model instead of mere efficiency when you are constantly indebted to seed companies and dealers? In this article, with the dilemmas that cannot be answered in a single sentence, we will try to create awareness of the 'what is' and 'what ought to be' in agriculture and food ethics. We also aim to discuss the ethical dilemmas faced in agricultural production based on philosophy.[¤]METHODS[|]If complex and multi-factored dilemmas are simplified without being grounded, an easy solution is sought. However, when complex and multi-factored dilemmas are based on the philosophical plane, they can be understood comprehensively. The focus of this article is that solutions to economic and political problems in agricultural and food ethics are not only scientific.[¤]RESULTS[|]Although scientific developments provide various solutions, some solutions not discussed at a philosophical level will always be incomplete.[¤]DISCUSSION AND CONCLUSION[|]As long as ethical dilemmas in agricultural production remain undiscussed, man will continue to consume nature and to consume himself while he does so. For the solution of dilemmas faced in agriculture and food ethics; recommended starting point is understand and discuss the intertwined causes and effects instead of identifying and eliminating the individual negative effects.[¤]

Background The Constitutional Court of South Korea declared that an abortion ban was unconstitutional on April 11, 2019. The National Health Care System will provide abortion care across the country as a formal medical service. Conscientious objection is an issue raised during the construction of legal reforms. Methods One hundred sixty-seven perioperative nurses responded to the survey questionnaire. Nurses’ perception about conscientious objection, support of legislation regarding conscientious objection, and intention to object were measured. Logistic regression was used to explore the factors associated with support of the legislation and the intention to conscientiously object. Results Only 28.8% of the responding nurses were aware of health care professionals’ conscientious objection. The majority (68.7%) felt that patients’ rights should be prioritized over health care professionals’ conscientious objection. On the other hand, 45.8% supported the legislation on conscientious objection to abortion, and 42.5% indicated a willingness to refuse to participate in an abortion case if conscientious objection was permitted. Religion, awareness of conscientious objection, and prioritizing of nurses’ right to conscientious objection were significantly associated with supporting the legislation. Moreover, religion and prioritizing nurses' rights were significantly associated with the intention to conscientiously object. Conclusions This study provides information necessary for further discussion of nurses’ conscientious objection. Nursing leaders, researchers, and educators should appeal to nurses and involve them in making policies that balance a women's right to non-discrimination and to receiving appropriate care with nurses' rights to maintain their moral integrity without compromising their professional obligation.

Background and Objectives: The pain and anxiety experienced by burn patients during dressing change cannot be thoroughly controlled by painkillers and anxiolytics. Evidence has documented that reciting the name of God can positively impact the reduction of pain and anxiety caused by aggressive procedures. Therefore, the present study aimed to investigate the effect of reciting the name of God on the pain and anxiety caused by dressing change in patients with burn injuries. Methods: The present clinical trial study was performed on 71 patients admitted to the burn ward of Nekouei-Hedayati-Forghani Hospital affiliated to Qom University of Medical Sciences in 2017. Patients were selected by the convenience sampling method and randomly assigned to experimental and control groups using the stratified randomization method. Thereafter, 10 min before dressing change, the patients in the experimental group were asked to recite the name of God, while the cases in the control group received the routine care. Patients' pain intensity was measured before mentioning the name of God and immediately after dressing change. Anxiety caused by burn pain was measured before mentioning the name of God, before dressing change, immediately after dressing change, and 15 min later. Data were analyzed in SPSS software (version 22) using descriptive and analytical statistics (chi-square, independent t-test, and paired t-test). Results: The mean age of participants was reported as 44.59±9.13. The result of the independent t-test showed that the mean score of pain immediately after dressing change was found to be lower in the intervention group, compared to the control group (P=0.04). Moreover, the result of pair t-test in the intervention group demonstrated that the mean score of pain-induced anxiety was lower immediately after dressing change, in comparison with the time before reciting the name Of God (P

Since the first days of mankind, soil has been unchanging component of the world history. Soil has been the main reason for the transition from hunting to settled life, used in the creation of dozens of tools and equipments and again it has been a reason for the wars delivering and ending world civilizations. Soil is the basic element on which man lives and depends on it. On the other hand, human beings have regarded the soil as a tool and a lifeless resource in providing food with a utilitarian mentality throughout history. In the second half of the nineteenth century, after the realization of the fact that soil resources have been damaged by the effects of human activities such as agriculture, industry and urbanization, causing irreversible degradations, mankind started to think about the ways to use the soil in a sustainable manner and also to protect it. Despite the intensive efforts of the international scientific communities and public societies, the common understanding of soil has still been limited to the sense of treating soil as a lifeless tool that must be managed to do agriculture. However, human is not a master of soil ecosystem but a member of it. Soil is a shelter of many living things creating a huge biodiversity over the planet earth and more importantly it regulates food and water cycles as well as the climate. For that reason, we have moral responsibilities towards the soil that we share with many other creatures. In this regard, soil ethics may gain us different perspectives to handle and solve global soil problems in the future. This review seeks opportunities to link soil ethics to current global soil issues to facilitate future challenges on a more sustainable life.

espanolLa maternidad subrogada plantea multiples conflictos eticos y juridicos dificiles de resolver: filiacion del menor, instrumentalizacion o mercantilizacion de la mujer gestante, compra-venta de ninos, inseguridad juridica, etc. En este trabajo se analizaran los aspectos bioeticos en conflicto y la regulacion juridica que existe al respecto. EnglishSurrogacy raises multiple ethical and legal conflicts on several difficult issues: parentage, the exploitation and commercialisation of pregnant women, the sale of infants, lack of legal protection, etc. This paper analyses the bioethical issues involved and current legislation in this regard.

Background and Objectives: The challenges faced by the mothers of children with behavioral problems underline the necessity of improving psychological characteristics, especially quality of life, in this group. Regarding this, the present study was conducted to predict the quality of life in terms of spiritual intelligence and resiliency in mothers of children with behavioral problems in 2018. Methods: This descriptive-correlational research was performed on 100 mothers of children with behavioral problems referring to the counseling centers of Neyshabour, Razavi Khorasan, Iran, in 2018. The participants were selected using the multistage random sampling technique. The data collection was performed using three questionnaires, namely the Connor-Davidson Resilience Scale, World Health Organization Quality of Life–BREF, and spiritual intelligence. Then data were analyzed in SPSS software (version 23). Results: Based on the obtained results, quality of life showed a positive and significant relationship with spiritual intelligence (r=0.59, P

Background and Objectives: Lifestyle modifications pertain to all aspects of life, including physical, mental, and psychological domains. Therefore, the achievement of any kind of health, especially mental health, has come into special focus. The current study aimed to investigate the Islamic lifestyle and its relationship with depression and anxiety among the students of Qom University of Medical Sciences. Methods: This descriptive cross-sectional study was conducted on 500 students of Qom University of Medical Sciences. They were selected by cluster random sampling among all students of Qom University of Medical Sciences. To assess the relationship of Islamic lifestyle with depression and anxiety among students, the following instruments were utilized: Kaviani Islamic Lifestyle Survey Test- short form (ILST), Beck Anxiety Inventory, and Goldberg Depression Questionnaire. The data were analyzed in SPSS software using the Pearson correlation coefficient and linear regression test. Results: Based on the results of the present study demonstrated that the Pearson correlation coefficient between lifestyle and depression was obtained at R=-0.15; moreover, this value was calculated at R=-0.12 for lifestyle and anxiety. Moreover, people with a better lifestyle experience less anxiety and depression and vice versa Furthermore, anxiety, and depression were not significantly correlated with such demographic variables as age, grade point average, gender, place of residence, and marital status, as compared to the Islamic lifestyle. Conclusion: As evidenced by the obtained results, anxiety and depression can predict people's lifestyle. Therefore, it is recommended that standard educational programs focus on the Islamic lifestyle in order to promote better health in the students.

The COVID-19 crisis has highlighted the precariousness and injustices within the healthcare systems of many African countries. Ever since the pandemic broke out on the continent, the ability of its health facilities to provide an adequate response to the COVID-19 crisis has been severely tested. Quality healthcare is a luxury that few can afford in Cameroon. Prevention and awareness campaigns are often the only means available to prevent the propagation of the virus. A return to herbal medicines appears to be the only way forward. This is a new field of research and therefore an invitation to a different approach to the ethics of life on the continent. Its exploration includes that which is specific to the continent; its proximity to nature and, as stated by Achille Mbembe, its rich ethics of travel.

Background & Aims: Pornography in cyberspace is one of the emerging and multidimensional challenges in society. Each discipline offers different criteria, reasons, perspectives and solutions according to their point of view; But this multidimensional phenomenon has involved all aspects of human societies in individual and group dimensions and has left negative consequences. The aims of this study are to analyze and explain pornography from the perspective of spirituality, ethics and medicine. The current legislative approach is challenged by ethical and medical discourse with emphasis on the spirituality of human beings in society. Methods: The present study is a systematic review that was conducted in 2009 in domestic databases such as Mgiran and Normagz without time limit with the keywords pornography, pornography and spirituality, pornography and medicine, pornography and ethics. Findings: Based on various criteria and reasons governing computer pornography, both social and moral, as well as medical criteria, computer pornographers have a deviant and sick personality, contrary to the legal opinion that computer pornography is criminal and Considering the punishment for it, the present article, from a medical point of view and based on the approach of spirituality and health of society, has selected corrective, educational and clinical measures as a desirable action and suggests them to policy makers. Conclusion: According to the results of this study, computer pornography has more severe and destructive consequences on the moral and spiritual health of a person than a crime; This phenomenon has negative effects on the moral dimensions of individuals and groups at all ages and can actually impair the health of a person in all its dimensions, especially the moral health of the individual. Disorder in the individual health of individuals in a society is equal to the low mental and spiritual health of the society.

EnglishThe fight against food insecurity (FI) is one of the targets of the second Sustainable Development Goal: zero hunger and sustainable agriculture. This study sought to assess the food security of beneficiaries of a Brazilian income transfer programme, from the perspective of the Bioethics of Protection. The Brazilian Food Insecurity Scale was used to assess FI and applied to 298 female beneficiaries of an income transfer programme. The results revealed that 58.1% (n=173) had mild FI, 16.4% (n=49) moderate FI, and 8.1% (n=24) severe FI. The data proves that beneficiaries have alarming rates of FI and that there is an urgent need for solutions that mitigate the vulnerabilities to which these families are exposed. portuguesO combate a inseguranca alimentar (IA) e um dos alvos do segundo objetivo do desenvolvimento sustentavel: fome zero e agricultura sustentavel. Este estudo buscou avaliar a seguranca alimentar de titulares de um programa de transferencia de renda (PTR) brasileiro, na perspectiva da Bioetica de Protecao. Para avaliacao da IA utilizou-se a Escala Brasileira de Inseguranca Alimentar, aplicada em 298 mulheres titulares do PTR. Os resultados revelaram que 58,1% (n=173) apresentavam IA leve, 16,4% (n=49) IA moderada, e 8,1% (n=24) IA grave. Estes dados suportam que beneficiarios de PTR possuem indices alarmantes de IA e que ha necessidade urgente no apontamento de solucoes para tais questoes para mitigar as vulnerabilidades a que essas familias estao expostas.

Background Informed consent is often cited as the “cornerstone” of research ethics. Its intent is that participants enter research voluntarily, with an understanding of what their participation entails. Despite agreement on the necessity to obtain informed consent in research, opinions vary on the threshold of disclosure necessary and the best method to obtain consent. We aimed to investigate Australian researchers’ views on, and their experiences with, obtaining informed consent. Methods Semi-structured interviews were conducted with 23 researchers from NSW institutions, working in various fields of research. Interviews were analysed and coded to identify themes. Results Researchers reported that consent involved information disclosure, understanding and a voluntary decision. They emphasised the variability of consent interactions, which were dependent on potential participants’ abilities and interests, study complexity and context. All researchers reported providing written information to potential participants, yet questioned the readability and utility of this information. The majority reported using signed consent forms to ‘operationalise’ consent and reported little awareness of, and lack of support in implementing more dynamic informed consent procedures, such as verbal informed consent, that was fit for the purposes of their studies. Views on Human Research Ethics Committees (HRECs) varied. Some reported inconsistent, arduous inputs on the information form and consent process. Others expressed reliance on HRECs for guidance, viewing them as institutional safeguards. Conclusions This study highlights the importance of transparent relationships, both between researchers and participants, and between researchers and HRECs. Where the relationship with study participants was reported as more robust, researchers felt that they were better able to ensure participants made better, more informed decisions. Where the relationship with HRECs was reported as more robust, researchers were more likely to view them as institutional safeguards, rather than as bureaucratic hindrances. Conscientious and mindful researchers are paramount to ensuring the procedure accommodates individual requirements. This study advocates that when designing ethical informed consent practices, researchers should be integrated as autonomous players with a positive input on the process, rather than, in the worst case, predatory recruiters to be curtailed by information forms and oversight.

espanolEl autor sostiene que los desastres, en la mayor parte de los casos, no son naturales. Aunque los eventos naturales de riesgo normalmente afectan a todos los residentes de una region, rara vez afectan a todos de la misma manera. Los grados de vulnerabilidad social se distribuyen de manera desigual en la mayor parte de las sociedades. La vulnerabilidad social es el resultado de la distribucion de poder, la riqueza y la posicion social. Su distribucion desigual plantea un problema de justicia social. El autor tambien aborda la relacion entre el cambio climatico y el aumento de los desastres climaticos. La “ecologia integral” del papa Francisco se plantea como un camino o puente hacia el futuro. EnglishThe paper argues that, for the most part, disasters are not natural. Although natural hazards normally affect all residents of a geographical area, they are rarely affected to the same degree, given that social vulnerability is unequally distributed in most societies. Social vulnerability is causally related to the distribution of wealth, power, and social status in society, therefore, its distribution is a social justice issue. This paper also analyses the connections between climate change and the increased risk of climate disasters. Pope Francis’ “integral ecology” is proposed as a path to the future.

In the United States alone, the prevalence of AD is expected to more than double from six million people in 2019 to nearly 14 million people in 2050. Meanwhile, the track record for developing treatments for AD has been marked by decades of failure. But recent progress in genetics, neuroscience and gene editing suggest that effective treatments could be on the horizon. The arrival of such treatments would have profound implications for the way we diagnose, triage, study, and allocate resources to Alzheimer’s patients. Because the disease is not rare and because it strikes late in life, the development of therapies that are expensive and efficacious but less than cures, will pose particular challenges to healthcare infrastructure. We have a window of time during which we can begin to anticipate just, equitable and salutary ways to accommodate a disease-modifying therapy Alzheimer’s disease. Here we consider the implications for caregivers, clinicians, researchers, and the US healthcare system of the availability of an expensive, presymptomatic treatment for a common late-onset neurodegenerative disease for which diagnosis can be difficult.

Background Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants in BRCA1 and BRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there may be ethical reasons to not screen for pathogenic variants in a panel, or to revise the way in which testing and disclosing of results are carried out. Main text In this paper we discuss the ethical aspects of genetic testing for an increased risk of breast cancer with a special focus on the ethical differences between screening for pathogenic variants in BRCA1/2 and a seven gene panel. The paper identifies that the panel increases the number of secondary findings as well as the number of variants of uncertain significance as two specific issues that call for ethical reflection. Conclusions We conclude that while the problem of handling secondary findings should not be overstated with regard to the panel, the fact that the panel also generate more variants of uncertain significance, give rise to a more complex set of problems that relate to the value of health as well as the value of autonomy. Therefore, it is insufficient to claim that the seven gene panel is preferable by only referring to the higher cost effectiveness of the panel.

Background Regulations on forgoing life-sustaining treatment (LST) have developed in Asian countries including Japan, Korea and Taiwan. However, other countries are relatively unaware of these due to the language barrier. This article aims to describe and compare the relevant regulatory frameworks, using the (more familiar) situation in England as a point of reference. We undertook literature reviews to ascertain the legal and regulatory positions on forgoing LST in Japan, Korea, Taiwan, and England. Main text Findings from a literature review are first presented to describe the development of the regulatory frameworks surrounding the option of forgoing LST in each country. Based on the findings from the four countries, we suggest five ethically important points, reflection on which should help to inform the further development of regulatory frameworks concerning end-of-life care in these countries and beyond. There should be reflection on: (1) the definition of – and reasons for defining – the ‘terminal stage’ and associated criteria for making such judgements; Korea and Taiwan limit forgoing LST to patients in this stage, but there are risks associated with defining this too narrowly or broadly; (2) foregoing LST for patients who are not in this stage, as is allowed in Japan and England, because here too there are areas of controversy, including (in England) whether the law in this area does enough to respect the autonomy of (now) incapacitated patients; (3) whether ‘foregoing’ LST should encompass withholding and withdrawing treatment; this is also an ethically disputed area, particularly in the Asian countries we examine; (4) the family’s role in end-of-life decision-making, particularly as, compared with England, the three Asian countries traditionally place a greater emphasis on families and communities than on individuals; and (5) decision-making with and for those incapacitated patients who lack families, surrogate decision-makers or ADs. Conclusion Comparison of, and reflection on, the different legal positions that obtain in Japan, Korea, Taiwan, and England should prove informative and we particularly invite reflection on five areas, in the hope the ensuing discussions will help to establish better end-of-life regulatory frameworks in these countries and elsewhere.

Background Thorough information of the patient is an integral part of the process of shared decision making. We aimed to investigate if detailed information about medication may induce nocebo (or placebo) effects. Methods We conducted a randomized, single-blind, pilot-study including n = 51 psychiatric in-patients aged between 18 and 80 years with a depressive disorder and accompanying sleeping disorders. In the intervention group we provided thorough information about adverse effects, while the control group received only a simple consent procedure. In both groups, patients received an open-label placebo pill instead of their sleeping medication. Results No statistically significant differences between the intervention group and the control group were found regarding the main outcome parameter (a visual analogue scale indicating impairment by the new pill). Conclusion In this study, we were not able detect an effect of informed consent vs. simple consent on the emergence of placebo or nocebo effects. This finding is contrary to most assumptions and publications about this topic. Trial registration Trial registration number: DRKS00017653, registered August 30th 2018. Retrosprectively registered.