Search

Equal access to vaccines has been one of the key ethical challenges during the COVID-19 pandemic. Most scholars consider the massive purchase and hoarding of vaccines by high-income countries, especially at the beginning of the pandemic, to be unjust towards the vulnerable living in low-income countries. A recent proposal by Andreas Albertsen of a vaccine tax has been put forward to remedy this problem. Under such a scheme, high-income countries would pay a contribution, conceptualised as a vaccine tax, dedicated to buying vaccines and distributing them to low and middle-income countries. Proceeding from this proposal, we critically assess the feasibility of a vaccine tax and suggest how to conceptualise and implement a vaccine tax in practice. We present our ‘VaxTax model’ and explore its comparative advantages and disadvantages while considering other possible measures to address the global vaccine access problem, also in view of future pandemics and disease outbreaks.

Zusammenfassung. Shared Decision-Making (SDM) ist ein normatives Modell der Entscheidungsfindung im klinischen Kontext, bei dem Ärzt_in und Patient_in alternative Behandlungsoptionen abwägen und gemeinsam eine von dem Patienten oder der Patientin ausgehende Werteentscheidung treffen. Wichtig dabei ist, dass der Informationsaustausch frei und ungezwungen vonstattengeht und Vor- sowie Nachteile verschiedener Behandlungsoptionen sorgfältig abgewogen werden. Ziel dieses Artikels ist es, das Konzept des Shared Decision-Makings historisch und begrifflich einzuordnen und in einer normativen Theorie der Patient_innenautonomie zu verankern. Des Weiteren soll der Anwendungsbereich im klinischen Alltag genauer definiert und die Grenzen des SDM-Modells aufgezeigt werden. Dabei gilt es zu ermitteln, unter welchen Bedingungen Patient_in und Ärzt_in Entscheidungen gemeinsam treffen, welche Rolle der ärztlichen Fachperson dabei zukommt und wann die behandelte Person potenziell zu viel oder zu wenig am Entscheidungsprozess teilnimmt.

Mit steigender Komplexität der Entscheidungsprozesse steigt auch die Komplexität der Kommunikationsprozesse, welche von allen an der Behandlung beteiligten Fachpersonen angepasste kommunikative Fertigkeiten erfordern. Shared Decision-Making (SDM) erfordert deswegen als Prozess der gemeinsamen Entscheidungsfindung auch einen konsequenten Miteinbezug und die Mitgestaltung durch alle beteiligten Professionen. Wie Interprofessionalität (IP) verfolgt auch SDM das Ziel, bestmögliche Rahmenbedingungen für den klinischen Kontext herzustellen (hier die auf die Person «zugeschnittene» und mit ihr aufgrund ihrer Präferenzen und Werte vereinbarte Behandlung). Die zahlreichen positiven Auswirkungen sowohl von SDM als auch der interprofessionellen Zusammenarbeit machen die Integration beider Ansätze im klinischen Alltag nicht nur zu einer ethischen Notwendigkeit, sondern auch zu einer Voraussetzung für eine optimale Behandlungsqualität. Die spezifische Struktur von SDM hilft nicht nur in einer dyadischen Entscheidungssituation zwischen Ärzt_in und Patient_in, sondern auch in den interprofessionellen Behandlungsteams, sich von der individualistischen Sichtweise einer einzigen besten Lösung zu trennen und zu einem stärker interprofessionell orientierten Teamansatz überzugehen, der sowohl den Patient_innen als auch dem behandelnden Team zugutekommt., In parallel with the growing complexity of decision-making processes, also the complexity of communication increases. This phenomenon requires adapted communication skills from all professions involved in the treatment of the patient. Consequently, the process of shared decision-making (SDM) also requires the continuous and active involvement of all the professions involved in the care process. Like the concept of interprofessional collaboration (IP), also SDM pursues the goal of creating the best possible framework conditions for the clinical context (in this case, treatment that is “tailored” to the person and agreed with him or her on the basis of his or her preferences and values). The numerous positive effects of both SDM and IP make the integration of both approaches in clinical practice not only an ethical necessity, but also a prerequisite for optimal treatment quality. The specific structure of SDM helps not only in a dyadic decision-making situation between physician and patient. It also encourages the interprofessional team to move away from an individualistic view of a single best solution to a more interprofessional team approach, which benefits both the patient and all the involved caregivers.

Hintergrund: Das Spektrum der Pflegeberatungsangebote ist beachtlich. Verschiedene Berufsgruppen mit jeweils unterschiedlichen Qualifikationen und Zielsetzungen führen die Beratungen durch, und die Erreichbarkeit sowie die Serviceangebote der jeweiligen Beratungsstellen variieren sehr. Ziel dieser Studie ist das Herausarbeiten von Empfehlungen für pflegebedürftige Personen und ihre Angehörigen, um a) mehr Transparenz und Kenntnisse über das Spektrum an Pflegeberatungen für Pflegebedürftige und ihre Angehörige sowie professionelle Akteur*innen herzustellen und b) die Strukturen des heterogenen Spektrums der Pflegeberatungen zu optimieren mittels einer qualitativen Studie mit Expert*innen am Beispiel des Landkreises Lörrach. Methoden: Ausgehend von einer systematischen Literaturrecherche wurden 21 leitfadengestützte Expert*inneninterviews fünf verschiedener Interessensvertretergruppen (Vertreter*innen pflegebedürftiger Personen und ihrer Angehörigen, Leistungserbringer, Kostenträger, Landkreis und Kommunen, Politik) analysiert. Alle Interviews wurden digital aufgenommen und wörtlich transkribiert. Die Datenauswertung erfolgte mit der inhaltlich strukturierenden Inhaltsanalyse nach Kuckartz. Ergebnisse: Aus 21 Transkripten der Expert*innen gingen neun Hauptkategorien hervor. Exemplarisch werden im Folgenden die Erkenntnisse aus vier Hauptkategorien aufgezeigt, die in Bezug zum Kriterium Transparenz stehen. Die Expert*innen berichten von zahlreichen Barrieren, die sie bei pflegebedürftigen Personen und ihren Angehörigen erkennen, um eine Pflegeberatung in einem hochkomplexen Gesundheitssystem in Anspruch nehmen zu können. Die derzeitige Pflegeberatungsstruktur ist für informationsbedürftige Personen ohne Hintergrundwissen zum Gesundheitssystem intransparent und eine Differenzierbarkeit der verschiedenen Pflegeberatungsangebote mit den teils unterschiedlichen Aufgaben kaum möglich. Die grundsätzlich themenspezifisch aufgebaute Beratungsstruktur ist geprägt von unkoordinierten Parallelstrukturen, auch zum Thema Pflege, die selbst den professionellen Akteur*innen den Überblick und die Orientierung für eine zielgerichtete Inanspruchnahme der Beratungsangebote von Ratsuchenden, wie pflegebedürftigen Personen und ihren Angehörigen erschweren. Die Expert*innen bekräftigen, wie wichtig kreative Ideen und verschiedene Kanäle unter Berücksichtigung der Generationenunterschiede und dem differierenden Informationsverhalten der Ratsuchenden sind, um die Informationsvermittlung und die Sichtbarkeit der Pflegeberatungsangebote zu erhöhen. Für pflegebedürftige Personen und ihre Angehörigen sind niedrigschwellige, bürgernahe, regionale und barrierefreie Zugänge zu Informationen zu schaffen. Primär für professionelle Akteur*innen sollte eine zentrale Plattform auf Landkreisebene errichtet werden, die viele beim Pflegestützpunkt oder beispielsweise beim Landratsamt angesiedelt sehen, auf der die Fäden zusammenlaufen und sämtliche Pflegeberatungsangebote und Aufgabenbereiche beinhaltet. Diskussion und Schlussfolgerung: Insgesamt werden mit den Studienergebnissen zahlreiche systemische Schwachstellen im Spektrum der Pflegeberatungsangebote und im Versorgungssystem aufgezeigt, welche hier auf das regionale Forschungsfeld begrenzt sind und aus der Perspektive des Versorgungsmanagements betrachtet wurden. Die Relevanz, die Strukturqualität von Pflegeberatungen zu optimieren, wird in der Ergebnisanalyse deutlich. Eine Reform der Sozialgesetzgebung, vor allem der Sozialen Pflegeversicherung (Elftes Buch), ist aus der Interviewanalyse abzuleiten und sollte durch eine landesweite Erhebung weiter untersucht werden.

Conversational artificial intelligence (CAI) presents many opportunities in the psychotherapeutic landscape-such as therapeutic support for people with mental health problems and without access to care. The adoption of CAI poses many risks that need in-depth ethical scrutiny. The objective of this paper is to complement current research on the ethics of AI for mental health by proposing a holistic, ethical, and epistemic analysis of CAI adoption. First, we focus on the question of whether CAI is rather a tool or an agent. This question serves as a framework for the subsequent ethical analysis of CAI focusing on topics of (self-) knowledge, (self-)understanding, and relationships. Second, we propose further conceptual and ethical analysis regarding human-AI interaction and argue that CAI cannot be considered as an equal partner in a conversation as is the case with a human therapist. Instead, CAI's role in a conversation should be restricted to specific functions.

What has the past reaction to the COVID-19 pandemic taught us? We have seen that many low and middle-income countries (LMICs) still lack access to vaccines, and it seems little progress has been made in the last few months and year. This article discusses whether the current strategies, most notably, vaccine donations by the international community and the COVID-19 global access facility COVAX, offer meaningful solutions to tackle the problem. At the centre of our analysis, we compare the concepts of "donations" and "charity" with "vaccine equity" and the "empowerment" of poorer countries. We suggest that the achievement of fair global vaccine production requires that our global approach is supportive of the idea of empowerment. We, therefore, need structural reforms, which would most importantly include capacity building, to positively impact this goal and to take the interests of the global poor seriously.

No abstract available.

The widespread use of algorithms for prediction-based decisions urges us to consider the question of what it means for a given act or practice to be discriminatory. Building upon work by Kusner and colleagues in the field of machine learning, we propose a counterfactual condition as a necessary requirement on discrimination. To demonstrate the philosophical relevance of the proposed condition, we consider two prominent accounts of discrimination in the recent literature, by Lippert-Rasmussen and Hellman respectively, that do not logically imply our condition and show that they face important objections. Specifically, Lippert-Rasmussen’s definition proves to be over-inclusive, as it classifies some acts or practices as discriminatory when they are not, whereas Hellman’s account turns out to lack explanatory power precisely insofar as it does not countenance a counterfactual condition on discrimination. By defending the necessity of our counterfactual condition, we set the conceptual limits for justified claims about the occurrence of discriminatory acts or practices in society, with immediate applications to the ethics of algorithmic decision-making.

The current humanitarian use of drones is focused on two applications: disaster mapping and medical supply delivery. In response to the growing interest in drone deployment in the aid sector, we sought to develop a resource to support value sensitivity in humanitarian drone activities. Following a bottom-up approach encompassing a comprehensive literature review, two empirical studies, a review of guidance documents, and consultations with experts, this work illuminates the nature and scope of ethical challenges encountered by humanitarian organizations embarking upon innovation programmes. The Framework for the Ethics Assessment of Humanitarian Drones (FEAHD) identifies five values and five key questions related to ethical considerations along the decision chain of humanitarian drone activities. It fills a gap between high-level, principle-based guidance related to humanitarian innovation, and detailed operation-oriented checklists for projects involving the use of drones. In this way, the FEAHD contributes to support value sensitivity in the humanitarian use of drones.

The health professions in the German-speaking region of Germany, Austria and Switzerland, the so-called D-A-CH area, are in dynamic phases of their professionalization due to their shift towards education at universities. In addition, the needs of current and future health care require all health professionals (HPs) to have collaborative competencies and a willingness to work together. This willingness and the challenge of co-creation of health systems by all health professionals is a good starting point for the evolution of the professions. So what must professional profiles, role beliefs - in short, modern professionalization strategies - be like so that, at the beginning of the 21st century, education and professional practice do not remain stuck in old thought structures and templates and in monodisciplinary „silo thinking.” What does it mean in concrete terms for the professionalization of professions that health care professions must (be able to) increasingly work together? Doesn’t professionalization so far tend to mean exclusivity and isn’t a stronger demarcation between the professions then the consequence? Against the background of professionalization through academization, do university studies not tend to aim at a stronger demarcation from other disciplines and professions? Professionalization includes exclusive competencies and specialized methods against the background of one's own profession-related action sciences. At the three-country meeting of the VFWG in Bern on 5–6 May 2022, this area of tension was put up for discussion in a World Café based on four theses. The following article documents the results of the individual discussion rounds and aims to stimulate a critical discourse

Background and aim Healthcare professionals are regularly exposed to moral challenges in patient care potentially compromising quality of care and safety of patients. Preventive clinical ethics support aims to identify and address moral problems in patient care at an early stage of their development. This study investigates the occurrence, risk factors, early indicators, decision parameters, consequences and preventive measures of moral problems. Method Semi-structured expert interviews were conducted with 20 interprofessional healthcare professionals from 2 university hospitals in Basel, Switzerland. A Likert scale questionnaire was completed by the interviewees and analysed using descriptive and inferential statistics. Results Healthcare professionals are frequently exposed to a variety of moral problems, such as end-of-life decisions, resource allocation and assessing the patient's will or decisional capacity. Thirty-four different risk factors for moral problems are identified, e.g. patient vulnerability, divergent values or world views, inadequate resources or poor ethical climate. Twenty-one early indicators are recognised such as disagreement between healthcare professionals, patients and relatives, emotional disturbances, gut feeling or conflict of conscience. A variety of preventive measures are suggested and presented in a preventive clinical ethics support process model. The most helpful measures are early ethical conversations with colleagues, early team-internal ethical case discussions and an ethics-trained contact person on the ward. Ethics training, kerbside consultations, proactive ethics consultations, ethics screening and rounds are also considered helpful. Conclusions Clinical ethics support services should not only offer reactive and complex, but also proactive and low-threshold support for healthcare professionals, patients and relatives.

Donor human milk is recommended by the World Health Organization both for its advantageous nutritional and biological properties when mother's own milk is not available and for its recognized support for lactation and breastfeeding when used appropriately. An increasing number of human milk banks are being established around the world, especially in low- and middle-income countries, to facilitate the collection, processing and distribution of donor human milk. In contrast to other medical products of human origin, however, there are no minimum quality, safety and ethical standards for donor human milk and no coordinating global body to inform national policies. We present the key issues impeding progress in human milk banking, including the lack of clear definitions or registries of products; issues around regulation, quality and safety; and ethical concerns about commercialization and potential exploitation of women. Recognizing that progress in human milk banking is limited by a lack of comparable evidence, we recommend further research in this field to fill the knowledge gaps and provide evidence-based guidance. We also highlight the need for optimal support for mothers to provide their own breastmilk and establish breastfeeding as soon as and wherever possible after birth.Lorsque la mère est dans l'impossibilité d'allaiter, l'Organisation mondiale de la Santé recommande d'opter pour le lait humain provenant de donneuses, tant pour ses propriétés nutritionnelles et biologiques que pour la contribution avérée qu'il apporte à la lactation et à l'allaitement quand il est utilisé à bon escient. Un nombre croissant de banques de lait humain s'établissent dans le monde entier, en particulier dans les pays à faible et moyen revenu, afin de faciliter la collecte, le traitement et la distribution de lait humain provenant de donneuses. Cependant, contrairement à d'autres produits médicaux d'origine humaine, il n'existe aucune norme minimale de qualité, de sécurité et d'éthique en la matière, et aucun organe de coordination global n'a été créé pour guider les politiques nationales. Dans le présent document, nous évoquons les principaux obstacles à la progression des banques de lait humain, notamment l'absence de définition claire ou de registre de produits; les problèmes relatifs à la réglementation, la qualité et la sécurité; ainsi que les questions éthiques entourant la commercialisation et l'exploitation potentielle des femmes. Jugeant cette progression limitée par le manque de données comparables, nous encourageons à mener d'autres recherches dans ce domaine pour combler les lacunes et fournir des orientations fondées sur des preuves. Nous soulignons également la nécessité d'offrir un soutien optimal aux mères afin qu'elles puissent produire leur propre lait et allaiter autant que possible immédiatement après la naissance.La Organización Mundial de la Salud recomienda la leche humana donada tanto por sus ventajosas propiedades nutricionales y biológicas cuando no se dispone de la propia leche materna como por su reconocido apoyo a la lactancia y al amamantamiento cuando se utiliza de manera adecuada. Cada vez se crean más bancos de leche humana en todo el mundo, sobre todo en los países de ingresos bajos y medios, para facilitar la recogida, el procesamiento y la distribución de leche humana donada. Sin embargo, a diferencia de lo que ocurre con otros productos médicos de origen humano, no existen estándares mínimos de calidad, seguridad y ética para la leche humana donada ni un organismo mundial de coordinación que sirva de base a las políticas nacionales. En este documento se exponen los principales problemas que impiden el progreso de los bancos de leche humana, como la falta de definiciones claras o de registros de productos; los problemas relacionados con la regulación, la calidad y la seguridad; y las preocupaciones éticas sobre la comercialización y la posible explotación de las mujeres. Dado que el progreso de los bancos de leche humana se ve limitado por la falta de evidencias comparables, se recomienda seguir investigando en este campo para compensar los vacíos de conocimiento y proporcionar una guía asistencial. Asimismo, se destaca la necesidad de apoyar al máximo a las madres para que se provean de su propia leche materna y establezcan la lactancia materna tan pronto y siempre que sea posible después del nacimiento.توصي منظمة الصحة العالمية بلبن الأمهات من الأطراف المتبرعة به، وذلك لخصائصه التغذوية والبيولوجية المفيدة عندما لا يتوفر لبن الأم، ولدعمه المعترف به للرضاعة والرضاعة الطبيعية عند استخدامه بشكل مناسب. يتم الآن إنشاء عدد متزايد من بنوك لبن الأمهات في جميع أنحاء العالم، وخاصة في الدول ذات الدخل المنخفض والدخل المتوسط، لتسهيل جمع ومعالجة وتوزيع لبن الأمهات من الأطراف المتبرعة به. ومع ذلك، وعلى النقيض من المنتجات الطبية الأخرى من أصل بشري، ليس هناك حد أدنى للجودة والسلامة والمعايير الأخلاقية للبن الأمهات من الأطراف المتبرعة به، ولا توجد هيئة عالمية منسقة لتوجيه السياسات الوطنية. نحن نقدم القضايا الرئيسية التي تعوق التقدم في بنوك لبن الأمهات، بما في ذلك الافتقار إلى تعريفات أو سجلات واضحة للمنتجات؛ مثل المسائل المتعلقة بالتنظيم والجودة والسلامة؛ والمخاوف الأخلاقية المتعلقة بالجانب التجاري والاستغلال المحتمل للمرأة. مع إدراك أن التقدم في بنوك حليب الأمهات محدود بسبب الافتقار إلى أدلة قابلة للمقارنة، فإننا نوصي بإجراء مزيد من البحث في هذا المجال لسد الفجوات المعرفية وتقديم إرشادات قائمة على الأدلة. ونحن نسلط الضوء أيضًا على الحاجة إلى الدعم الأمثل للأمهات ليقمن بتقديم ألبانهن، وبدء الرضاعة الطبيعية بأسرع ما يمكن وحيثما أمكن بعد الولادة.世界卫生组织建议人们捐赠母乳，因为当母亲自身的母乳不可用时，捐赠母乳具有充足的营养价值和生物特性，若使用得当，它可以对哺乳和母乳喂养提供有利的支持。世界各地正在建立越来越多的母乳库，特别是在中低收入国家，以推进捐赠母乳的收集、加工和分配。但是，与其他人类制造的医疗产品相比，捐赠母乳没有最低质量、安全和道德标准，也没有全球协调机构为国家政策提供信息。我们提出了阻碍母乳储存进展的关键问题，包括缺乏明确的产品定义或注册信息；监管、质量和安全方面的问题；以及对妇女商业化和潜在剥削的道德问题。认识到母乳储存的进展因缺乏可比证据而受到限制，我们建议在该领域展开进一步研究以填补知识空白并提供循证指导。我们还强调需要为母亲提供最佳支持，以支持她们提供自己的母乳，在孩子出生后尽快并尽可能地进行母乳喂养。.В случае отсутствия материнского молока Всемирная организация здравоохранения рекомендует использование донорского грудного молока как из-за его полезных питательных и биологических свойств, так и из-за общепризнанной поддержки лактации и грудного вскармливания при правильном использовании. Во всем мире создается все больше банков грудного молока, особенно в странах с низким и средним уровнем доходов, для облегчения сбора, обработки и распределения донорского грудного молока. Однако, в отличие от другой медицинской продукции человеческого происхождения, для донорского грудного молока не существует минимальных стандартов качества, безопасности и этики, а также отсутствует координационный глобальный орган для разработки национальной политики. Авторы раскрыли ключевые проблемы, препятствующие прогрессу в создании банков грудного молока (включая отсутствие четких определений или реестров продуктов), вопросы регулирования, качества и безопасности, а также этические проблемы в связи с коммерциализацией и потенциальной эксплуатацией женщин. Признавая, что прогресс в создании банков грудного молока ограничен отсутствием сопоставимых данных, авторы рекомендуют продолжить исследования в этой области, чтобы заполнить пробелы в знаниях и предоставить рекомендации, основанные на фактических данных. Подчеркивается также необходимость оптимальной поддержки матерей, чтобы они сами кормили ребенка грудью и по мере возможности начинали грудное вскармливание как можно скорее после родов, где бы они ни находились.

Background The need for an ethical debate about the use of coercion in intensive care units (ICU) may not be as obvious as in other areas of medicine, such as psychiatry. Coercive measures are often necessary to treat critically ill patients in the ICU. It is nevertheless important to keep these measures to a minimum in order to respect the dignity of patients and the cohesion of the clinical team. A deeper understanding of what patients and their relatives perceive during their ICU stay will shed different light on intensive care management. Patients' experiences of loss of control, dependency and abandonment may lead to a new approach towards a broader approach to the concept of coercion in intensive care. The aim of our research is to explore the experiences of patients and relatives in the ICU and to determine when it might be possible to reduce feelings and memories of coercion. Methods We conducted and analysed 29 semi-structured interviews with patients and relatives who had been in the ICU a few months previously. Following a coding and categorisation process in MAXQDA™, a rigorous qualitative methodology was used to identify themes relevant to our research. Results Five main themes emerged: memory issues; interviewees’ experiences of restricting measures and coercive treatment; patients’ negative perception of situational and relational dependency with the risk of informal coercion; patients’ perceptions of good care in a context of perceived dependency; progression from perception of coercion and dependency to respect for the person. All patients were grateful to have survived. However, coercion in the form of restraint, restriction of movement, and coercive treatment in the ICU was also acknowledged by patients and relatives. These included elements of informal coercion beyond restraints, such as a perceived negative sense of dependence, surrender, and asymmetrical interaction between the patient and health providers. Conclusions To capture the full range of patients' experiences of coercion, it is necessary to expand the concept of coercion to include less obvious forms of informal coercion that may occur in dependency situations. This will help identify solutions to avoid or reduce negative recollections that may persist long after discharge and negatively affect the patients' quality of life.

The aim of the study is to encourage a critical debate on the use of normality in the medical literature on DSD or intersex. For this purpose, a scoping review was conducted to identify and map the various ways in which “normal” is used in the medical literature on DSD between 2016 and 2020. We identified 75 studies, many of which were case studies highlighting rare cases of DSD, others, mainly retrospective observational studies, focused on improving diagnosis or treatment. The most common use of the adjective normal was in association with phenotypic sex. Overall, appearance was the most commonly cited criteria to evaluate the normality of sex organs. More than 1/3 of the studies included also medical photographs of sex organs. This persistent use of normality in reference to phenotypic sex is worrisome given the long-term medicalization of intersex bodies in the name of a “normal” appearance or leading a “normal” life. Healthcare professionals should be more careful about the ethical implications of using photographs in publications given that many intersex persons describe their experience with medical photography as dehumanizing.

Zusammenfassung. Die gemeinsame Entscheidungsfindung, beziehungsweise Shared Decision-Making, ist vor allem dann angezeigt, wenn die verfügbaren Evidenzen nicht klar erkennen lassen, welche medizinische Massnahme für einen bestimmten Patienten oder eine bestimmte Patientin die bessere Option ist, sodass die endgültige Entscheidung von den persönlichen Werten und Präferenzen von Patient_innen abhängt. Der Prozess der Werteklärung und Präferenzermittlung kann zeitaufwändig und für Patient_innen kognitiv und emotional anspruchsvoll sein. Zunehmend helfen daher Entscheidungshilfen (z.B. zur Nutzen-Schaden-Abwägungen) den Patient_innen, sich auf die medizinische Konsultation vorzubereiten und mit dem Behandlungsteam wertekongruente medizinische Entscheidungen zu treffen. Bei den meisten klinisch validierten Entscheidungshilfen handelt es sich um papierbasierte Flyer und Aufklärungsbroschüren. Es gibt auch computer-, audio-, video- oder webbasierte Entscheidungshilfen. Bei den webbasierten Hilfen wird das Potenzial interaktiver Technologien kaum genutzt trotz der gut bekannten Vorteile dieses Mediums. Ziel dieses Artikels ist es, einen Überblick über Entscheidungshilfen und Herausforderungen bei der Werteklärung und Präferenzerhebung zu geben und einige Entwicklungen bei interaktiven webbasierten Technologien aufzuzeigen, welche die Werteklärung und Präferenzerhebung erleichtern könnten.

This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity.

One’s willingness to accept an outcome or even to correct it depends on whether the underlying procedure is deemed legitimate. We examine a modified version of the dictator game, where dictatorship is assigned by a fair procedure that is linked to the participant actions but in effect is completely random, to illustrate that this belief is not independent of the outcome and is self-serving in its nature. We also discuss the perceptions of fairness and merit as potential drivers of the observed behavioral phenomenon.

The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the interpretation of the best interests principle by the United Nations Committee on the Rights of the Child. On this basis, it points out possible fields of application of the best interests principle with regard to paediatric healthcare and discusses the potential difficulties in the application of the best interests principle. Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing. Conclusion: The best interests principle requires action, inter alia, by health policymakers, professional associations, hospital managers and medical teams to ensure children receive the best possible healthcare. Whilst the best interests principle does not provide a conclusive solution to all ethical dilemmas in paediatric healthcare (as illustrated by the case studies), it provides children, medical teams, parents and families, and clinical ethicists with an indispensable framework for health care centred on the rights of the child. What is Known:• The best interests principle is one of the most widely discussed principles of medical ethics and human rights and one of the four general principles of the Convention on the Rights of the Child. What is New:• The present review discusses possible fields of application and potential difficulties of the best interests principle with regard to paediatric healthcare.• Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing.

ZusammenfassungDie Frage nach den Faktoren, die eine wirksame Ethik-Lehre in der Medizin ausmachen, blieb bislang weitgehend unbeantwortet. Vor allem im deutschsprachigen Raum wird hier zu wenig Forschung betrieben. Aufgrund fehlender wissenschaftlich aussagekräftiger Evaluationsstudien lässt sich somit mitunter nur vermuten, wie wirksam bestimmte Lehrformate und -methoden in der Ethik-Lehre tatsächlich sind. Die Auswahl von Lehrformaten und -methoden, die Ethik-Dozierende für das Erreichen eines festgelegten Lernziels einsetzen, wird häufig nicht nach evidenzbasierten Kriterien, sondern auf der Grundlage von guten oder schlechten Lehrerfahrungen sowie von unmittelbarem Feedback der Studierenden getroffen. Im vorliegenden Beitrag werden nach einem kurzen Überblick über Evaluationsverfahren ethischer Kompetenzen Erkenntnisse aus ausgewählten internationalen Wirksamkeitsstudien vorgestellt und auf ihre Relevanz für den Medizinethik-Unterricht diskutiert. Wenngleich die Erkenntnisse aus diesen Evaluations- und Meta-Studien aus anderen, angrenzenden Bereichen wie der Forschungsethik und anderen Lehrkontexten kommen, so können sie doch als Diskussionsanstoß dienen und dazu beitragen, Eckpunkte für die Gestaltung wirksamer Ethik-Lehre in der Medizin im deutschsprachigen Raum zu definieren.

BACKGROUND Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. PROCEDURE The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. RESULTS For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. CONCLUSION The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.

In everyday conversations, professional codes, policy debates, and academic literature, the concept of respect is referred to frequently. Bioethical arguments in recent decades equate the idea of respect for persons with individuals who are capable of autonomous decision-making, with the focus being explicitly on ‘autonomy,’ ‘capacity,’ or ‘capability.’ In much of bioethics literature, respect for persons is replaced by respect for autonomy. Though the unconditional respect for persons and their autonomy (irrespective of actual decision-making capacity) is established in Kantian bioethics, current argument and debates often revolve around a thin concept of autonomy, focusing on capacity and capability: persons are owed respect because they are ‘rational beings’ or with a focus on ‘agency’ and ‘decision-making abilities.’ However, these aspects alone are insufficient while engaging the concept of respect for persons, particularly in healthcare settings. This paper sets out to explore if the concept of respect for persons—as opposed to a thin concept of autonomy—could help us engage better in healthcare practices. We shall probe the practical value of the experiential aspect of respect—understood as the recognition of persons as respect-worthy through certain dispositions and deliberative acts—by reflecting on instances in clinical practice that tend to be dismissed as negligible or even unavoidable in a stressful environment such as a busy hospital. We shall argue that these instances are far from trivial but carry moral significance and express an unacceptable—disrespectful—attitude that can compromise the moral habitus in hospital settings. In our conclusion, we call for practicing recognition respect in the health professional–patient encounter by focussing on manners, attitudes, and behaviors. Furthermore, we call for continuous medical ethics education programs to address the moral significance of disrespectful behaviors and their manifestations in particular socio-cultural contexts.

ZusammenfassungSimulationen mit Simulationspersonen (Schauspieler*innen) gehören in der medizinischen Lehre zum Ausbildungs-Standard. In der medizinethischen Lehre ist dies bisher nicht in gleichem Umfang der Fall. Für ihren Einsatz, insbesondere in der klinischen Ethik, können gute Gründe angeführt werden, wie beispielsweise die Möglichkeit konkreter Erfahrungen als Lehrelement und die situationsspezifische Verbindung von Wissen, Können und Haltungen in einem Lernprozess. Die Konzeption von Simulationen mit Simulationspersonen in der medizinethischen Lehre ist jedoch voraussetzungsreich. Es müssen die mehrdimensionalen Lernziele und die Anforderungen an die medizinethische Lehre berücksichtigt werden. Der Beitrag möchte anhand eines konkreten Beispiels einen Überblick über die Entwicklung und Konzeption von Drehbüchern bzw. Rollen-Skripten für Simulationen mit Simulationspersonen für die Lehre in der klinischen Ethik als wichtigem Teilbereich der Medizinethik geben. Dabei wird auf die besonderen Voraussetzungen und Spezifika dieser Simulationen eingegangen. Abschließend wird kritisch diskutiert, welchen Stellenwert das Training von kommunikativen Fertigkeiten in der medizinethischen Theorie und klinisch-ethischen Praxis haben kann und soll. Der Beitrag schließt mit der Überlegung, ob nicht auch in der Fortbildung von klinischen Ethiker*innen Simulationspersonen zum Einsatz kommen sollten.

Video zur Tagung - Kurzpräsentation von Joelle Ott https://www.mdpi.com/article/10.3390/ijerph191710733/s1, Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient’s perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning-related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as a theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person’s individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS’ individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.

ZusammenfassungKrankenhausgewinne und Ökonomisierungstendenzen rücken zunehmend in den Mittelpunkt der Diskussion um die Verbesserung des Gesundheitswesens. Gewinnorientierte Ansätze zur Erzielung von Krankenhausrenditen haben eine ethische Dimension, denn das Patientenwohl muss im Vordergrund bleiben. Ein bedarfsorientierter wirtschaftlicher Ansatz ohne die Dominanz primärer Gewinnziele sollte zum übergreifenden Rahmen für den Krankenhaussektor werden.

Even with optimal treatment, some persons with severe and persistent mental illness do not achieve a level of mental health, psychosocial functioning and quality of life that is acceptable to them. With each unsuccessful treatment attempt, the probability of achieving symptom reduction declines while the probability of somatic and psychological side effects increases. This worsening benefit–harm ratio of treatment aiming at symptom reduction has motivated calls for implementing palliative approaches to care into psychiatry (palliative psychiatry). Palliative psychiatry accepts that some cases of severe and persistent mental illness can be irremediable and calls for a careful evaluation of goals of care in these cases. It aims at reducing harm, relieving suffering and thus improving quality of life directly, working around irremediable psychiatric symptoms. In a narrow sense, this refers to patients likely to die of their severe and persistent mental illness soon, but palliative psychiatry in a broad sense is not limited to end-of-life care. It can – and often should – be integrated with curative and rehabilitative approaches, as is the gold standard in somatic medicine. Palliative psychiatry constitutes a valuable addition to established non-curative approaches such as rehabilitative psychiatry (which focuses on psychosocial functioning instead of quality of life) and personal recovery (a journey that persons living with severe and persistent mental illness may undertake, not necessarily accompanied by mental health care professionals). Although the implementation of palliative psychiatry is met with several challenges such as difficulties regarding decision-making capacity and prognostication in severe and persistent mental illness, it is a promising new approach in caring for persons with severe and persistent mental illness, regardless of whether they are at the end of life.

Since its foundation in 2010, the annual philosophy thematic edition of this journal has been a forum for authors from a wide range of disciplines and backgrounds, enabling contributors to raise questions of an urgent and fundamental nature regarding the most pressing problems facing the delivery and organization of healthcare. Authors have successfully exposed and challenged underlying assumptions that framed professional and policy discourse in diverse areas, generating productive and insightful dialogue regarding the relationship between evidence, value, clinical research and practice. These lively debates continue in this thematic edition, which includes a special section on stigma, shame and respect in healthcare. Authors address the problems with identifying and overcoming stigma in the clinic, interactional, structural and phenomenological accounts of stigma and the 'stigma-shame nexus'. Papers examine the lived experience of discreditation, discrimination and degradation in a range of contexts, from the labour room to mental healthcare and the treatment of 'deviancy' and 'looked-after children'. Authors raise challenging questions about the development of our uses of language in the context of care, and the relationship between stigma, disrespect and important analyses of power asymmetry and epistemic injustice. The relationship between respect, autonomy and personhood is explored with reference to contributions from an important conference series, which includes analyses of shame in the context of medically unexplained illness, humour, humiliation and obstetric violence.

Since the beginning of the pandemic spread of the Coronavirus, societies have been reminded that the impact of Covid-19 and public health measures of infection containment reflect known gradients of inequality. Measures focusing only the (acknowledged) frontstage of the pandemic and neglecting its (unacknowledged) backstage—understood as those framework conditions indispensable for societies to thrive—have worsened the impact of social determinants of health on the most vulnerable, as shown by the deleterious effects of prolonged social isolation of residents of nursing homes. To reflect this phenomenon ethically, a framework is proposed which is inspired by the feminist philosopher Margret Little. At its core stands the assumption that caring for people and moral ends allows us to identify what is morally salient. This epistemological stance allows a critical look at the alleged dilemmas invoked to enforce brute, long-lasting policies of closing nursing homes in many places—especially in the light of their dubious effectiveness in preventing viral spread and the severe physical and psychological consequences for those affected. If moral salience is only fully perceived through the closeness of the caring relationship, the human suffering resulting from these policies reveals the utter inadequacy of the dilemma rhetoric used to justify them. This insight is illustrated by the personal experience of the author: He describes his role as an essential care partner of his mother living in a nursing home and forced into the role of a “visitor” who witnessed a constant deterioration of care. Based on an epistemological understanding of caring for making reliable moral judgments, potentially exclusionary effects of distinguishing essential from non-essential groups in care will be addressed together with the need to overcome strict boundaries between front- and backstage. Such efforts will strengthen the moral community of persons needing care, professional care givers and essential care partners.

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making.

Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons engaged in participatory research are central. The authors present and critically reflect on four research projects to show how they understood and implemented participatory research in different ways and what they have learned from their respective experiences. The “PaSuMi” project worked in the context of addiction prevention with migrants and provides a glimpse into different contexts of participatory research. The initiator of the study “Back into life—with a power wheelchair” works with post-stroke individuals who use the assistive device in community mobility and reflects on the shifting and intertwining roles of participants. In the research project “Workshops for implementation of expanded community nursing”, new professional roles for nurses in community nursing were developed; here limitations to participation and ways to deal with them are illustrated. Finally, the “DIPEx” project deals with challenges of enabling participation of persons with multiple sclerosis via narrative interviews on the experience of health and illness. All examples underline the necessity of a permanent reflection on relationships and power dynamics in participatory research processes.

Advance directives allow people to specify individual treatment preferences in case of decision-making incapacity involving decisions of utmost importance. There are many tools that provide information on the topic, digital forms for structured data input, or platforms that support data storage and availability. Yet, there is no tool supporting the innermost process of an advance directive: decision making itself. To address this issue, we developed a visual-interactive, semi-quantitative method for generating digital advance directives (DiADs) that harnesses the potential of digitalization in healthcare. In this article, we describe the DiAD method and its app lined with the exemplary narrative of user Mr S. linking the theory to an exemplary use case. The DiAD method is intended to lower barriers and increase comfort in creating an advance directive by shifting the focus from heavily text-based processes to visual representation and interaction, that is, from text to reflection.

Widely circulating anti-vaccine misinformation online has been constituting a large obstacle for the success of COVID-19 vaccination campaigns and for the well-being of people during the pandemic. In this paper we discuss strategies to mitigate negative effects of online anti-vaccine contents on public health and to prevent hesitant individuals from falling prey of the traps set by anti-vaccine disinformation spreaders. Here we discuss the importance of filling information voids and understanding trends and concerns that shape the vaccine debate, and we highlight the relevance of building resilience to vaccine misinformation by strengthening public health and digital literacy.

Background: Work stress places a heavy economic and disease burden on society. Recent technological advances include digital health interventions for helping employees prevent and manage their stress at work effectively. Although such digital solutions come with an array of ethical risks, especially if they involve biomedical big data, the incorporation of employees’ values in their design and deployment has been widely overlooked. Objective: To bridge this gap, we used the value sensitive design (VSD) framework to identify relevant values concerning a digital stress management intervention (dSMI) at the workplace, assess how users comprehend these values, and derive specific requirements for an ethics-informed design of dSMIs. VSD is a theoretically grounded framework that front-loads ethics by accounting for values throughout the design process of a technology. Methods: We conducted a literature search to identify relevant values of dSMIs at the workplace. To understand how potential users comprehend these values and derive design requirements, we conducted a web-based study that contained closed and open questions with employees of a Swiss company, allowing both quantitative and qualitative analyses. Results: The values health and well-being, privacy, autonomy, accountability, and identity were identified through our literature search. Statistical analysis of 170 responses from the web-based study revealed that the intention to use and perceived usefulness of a dSMI were moderate to high. Employees’ moderate to high health and well-being concerns included worries that a dSMI would not be effective or would even amplify their stress levels. Privacy concerns were also rated on the higher end of the score range, whereas concerns regarding autonomy, accountability, and identity were rated lower. Moreover, a personalized dSMI with a monitoring system involving a machine learning-based analysis of data led to significantly higher privacy (P=.009) and accountability concerns (P=.04) than a dSMI without a monitoring system. In addition, integrability, user-friendliness, and digital independence emerged as novel values from the qualitative analysis of 85 text responses. Conclusions: Although most surveyed employees were willing to use a dSMI at the workplace, there were considerable health and well-being concerns with regard to effectiveness and problem perpetuation. For a minority of employees who value digital independence, a nondigital offer might be more suitable. In terms of the type of dSMI, privacy and accountability concerns must be particularly well addressed if a machine learning-based monitoring component is included. To help mitigate these concerns, we propose specific requirements to support the VSD of a dSMI at the workplace. The results of this work and our research protocol will inform future research on VSD-based interventions and further advance the integration of ethics in digital health., Journal of Medical Internet Research, 25, ISSN:1438-8871

Introduction The coronavirus disease 2019 pandemic has placed intensive care units (ICU) triage at the center of bioethical discussions. National and international triage guidelines emerged from professional and governmental bodies and have led to controversial discussions about which criteria—e.g. medical prognosis, age, life-expectancy or quality of life—are ethically acceptable. The paper presents the main points of agreement and disagreement in triage protocols and reviews the ethical debate surrounding them. Sources of data Published articles, news articles, book chapters, ICU triage guidelines set out by professional societies and health authorities. Areas of agreement Points of agreement in the guidelines that are widely supported by ethical arguments are (i) to avoid using a first come, first served policy or quality-adjusted life-years and (ii) to rely on medical prognosis, maximizing lives saved, justice as fairness and non-discrimination. Areas of controversy Points of disagreement in existing guidelines and the ethics literature more broadly regard the use of exclusion criteria, the role of life expectancy, the prioritization of healthcare workers and the reassessment of triage decisions. Growing points Improve outcome predictions, possibly aided by Artificial intelligence (AI); develop participatory approaches to drafting, assessing and revising triaging protocols; learn from experiences with implementation of guidelines with a view to continuously improve decision-making. Areas timely for developing research Examine the universality vs. context-dependence of triaging principles and criteria; empirically test the appropriateness of triaging guidelines, including impact on vulnerable groups and risk of discrimination; study the potential and challenges of AI for outcome and preference prediction and decision-support.