Beyond Trade-Offs: Autonomy, Effectiveness, Fairness, and Normativity in Risk and Crisis Communication.

This paper addresses the critiques based on trade-offs and normativity presented in response to our target article proposing the Public Health Emergency Risk and Crisis Communication (PHERCC) framework. These critiques highlight the ethical dilemmas in crisis communication, particularly the balance between promoting public autonomy through transparent information and the potential stigmatization of specific population groups, as illustrated by the discussion of the mpox outbreak among men who have sex with men. This critique underscores the inherent tension between communication effectiveness and autonomy versus fairness and equity. In response, our paper reiterates the adaptability of the PHERCC framework, emphasizing its capacity to tailor messages to diverse audiences, thereby reducing potential stigmatization and misinformation. Through community engagement and feedback integration, the PHERCC framework aims to optimize the effectiveness of communication strategies while addressing ethical concerns. Furthermore, by involving affected communities in the communication strategy from the onset, the framework seeks to minimize ethical trade-offs and enhance the acceptance and effectiveness of public health messages.

International expert meeting on the donation and use of human milk: Brief report.

Where a mother's own milk is not available or is insufficient, donor human milk (DHM) processed by a human milk bank (HMB) is the recommended next best alternative. HMBs exist in over 65 countries. However, most countries have yet to establish national policies or programmes that support the provision of DHM. In July 2019, a group of international experts in fields relevant to human milk banking gathered at a meeting organised by the Institute of Biomedical Ethics, University of Zurich, and co-sponsored by the World Health Organisation. Prompted by the growing interest globally in creating and sustaining HMBs and addressing current safety and ethical concerns and standards, the aims of the meeting were to define knowledge gaps, determine the need for and scope of global guidelines and provide recommendations on steps that need to be taken at the international level. Following wide-ranging discussions that included the integration of milk banks into health care systems, strategy and policy, quality and safety, the use of DHM and associated ethical considerations, the overall conclusion of the meeting was that in the absence of global recommendations on the implementation, operation and regulation of HMBs, evidence-based guidance is urgently needed.

Large language models in medical ethics: useful but not expert.

Large language models (LLMs) have now entered the realm of medical ethics. In a recent study, Balas et al examined the performance of GPT-4, a commercially available LLM, assessing its performance in generating responses to diverse medical ethics cases. Their findings reveal that GPT-4 demonstrates an ability to identify and articulate complex medical ethical issues, although its proficiency in encoding the depth of real-world ethical dilemmas remains an avenue for improvement. Investigating the integration of LLMs into medical ethics decision-making appears to be an interesting avenue of research. However, despite the promising trajectory of LLM technology in medicine, it is crucial to exercise caution and refrain from attributing their expertise to medical ethics. Our thesis follows an examination of the nature of expertise and the epistemic limitations that affect LLM technology. As a result, we propose two more fitting applications of LLMs in medical ethics: first, as tools for mining electronic health records or scientific literature, thereby supplementing evidence for resolving medical ethics cases, and second, as educational platforms to foster ethical reflection and critical thinking skills among students and residents. The integration of LLMs in medical ethics, while promising, requires careful consideration of their epistemic limitations. Consequently, a well-considered definition of their role in ethically sensitive decision-making is crucial.

The PHERCC Matrix. An Ethical Framework for Planning, Governing, and Evaluating Risk and Crisis Communication in the Context of Public Health Emergencies.

Risk and crisis communication (RCC) is a current ethical issue subject to controversy, mainly due to the tension between individual liberty (a core component of fairness) and effectiveness. In this paper we propose a consistent definition of the RCC process in public health emergencies (PHERCC), which comprises six key elements: evidence, initiator, channel, publics, message, and feedback. Based on these elements and on a detailed analysis of their role in PHERCC, we present an ethical framework to help design, govern and evaluate PHERCC strategies. The framework aims to facilitate RCC, incorporating effectiveness, autonomy, and fairness. It comprises five operational ethical principles: openness, transparency, inclusivity, understandability, and privacy. The resulting matrix helps understanding the interplay between the PHERCC process and the principles of the framework. The paper includes suggestions and recommendations for the implementation of the PHERCC matrix.

Ethical Issues in Breastfeeding and Lactation Interventions: A Scoping Review.

BACKGROUND: Infant feeding interventions that promote and support breastfeeding are considered important contributions to global public health. As these interventions often target private settings (e.g., individuals' homes) and involve vulnerable populations (e.g., pregnant women, infants, and underprivileged families), a keen awareness of ethical issues is crucial. RESEARCH AIM: The purpose of this scoping review was to capture the key elements of the current ethical discourse regarding breastfeeding and lactation interventions. METHOD: A scoping review was conducted using Arksey and O'Malley's (2005) methodology to identify the ethical issues of breastfeeding and lactation interventions as they are reflected in the scholarly literature published between January 1990 and October 2022. Abstracts (N = 3715) from PubMed, ScienceDirect, JSTOR and the Cochrane Database of Systematic Reviews were screened. The final sample consisted of 26 publications. RESULTS: The recurring ethical issues identified in these studies were: the normative assumptions of motherhood; maternal autonomy and informed choice; information disclosure, balancing risks and benefits, and counseling practices; stigma and social context; ethics of health communication in breastfeeding campaigns; and the ethical acceptability of financial incentives in breastfeeding interventions. CONCLUSION: This review illustrated that, while a wide range of ethical arguments were examined, the emphasis has been primarily on accounting for mothers' experiences and lactating persons' choices, as well as achieving public health objectives relating to infant nutrition in breastfeeding interventions. To effectively and ethically implement breastfeeding and lactation interventions, we must consider the social, economic, and cultural contexts in which they occur. One key learning identified was that women's experiences were missing in these interventions and, in response, we suggest moving beyond the dichotomous approach of individual health versus population health.

A Swiss digital Delphi study on patient-reported outcomes.

AIMS OF THE STUDY: Health-related quality of life (HRQoL) indicators are patient-reported outcomes (PROs). PROs are defined as any report of the status of a patient's health condition or health behaviour that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. Despite Swiss national bodies (FOPH, FMH) recognising the potential of PRO measures (PROMs) for improving the health system, no consensus has yet emerged regarding a generic PROM framework or specific domains for practical uptake. The aim of the present digital Delphi study was to generate a consensual Swiss expert opinion on a generic PROM framework, measurement domains and items from a validated instrument (PROMIS [Patient-Reported Outcome Measurement Information System]) as well as on the role and implementation of PROs in the Swiss healthcare system via PRO consensus statements. METHODS: A 4-round digital Delphi study was conducted among Swiss PRO stakeholders. A total of n = 21 Swiss PROM stakeholders completed round 1 surveys on the PROM framework. During the stakeholder meeting, n = 11 stakeholders completed round 2 and round 3 surveys pertaining to measurement domains and items, respectively. In-meeting key questions and discussion items were extracted, consolidated into statements and subjected to consensus voting in a round 4, post-meeting survey. Consensus was defined as ≥70% agreement. RESULTS: Pre-meeting, agreement was reached for the tripartite framework of physical, mental and social health (95-100%). During the meeting, agreement was reached on all seven measurement domains of a generic PROM (PROMIS-29), ranging from 80% (Anxiety, Sleep Disturbance) to 100% (Pain Interference, Depression, Ability to Participate in Social Roles). Consensus was also reached for all PROMIS-29 items, with average domain consensus ranging from 83% (Sleep Disturbance, Ability to Participate in Social Roles) to 100% (Depression). Finally, four post-meeting consensus statements regarding PROs in Switzerland reached agreement. CONCLUSIONS: A Delphi method can help identify areas of need regarding PROMs in Switzerland. The current study identified a generic PROM as a missing quality indicator for the Swiss national health system's value. A pre-meeting informational briefing, expert presentations and moderation supported three voting rounds to help identify PROMIS-29 as a PROM framework (round 1), measurement domains (round 2) and items (round 3) as a basis for further validation research. The empirical agreement among diverse stakeholders supports broad consensus towards preliminary feasibility of integrating generic PROMs into the Swiss health system based on content relevance.

Women's experiences with non-invasive prenatal testing in Switzerland: a qualitative analysis.

BACKGROUND: Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent. METHODS: A nationwide qualitative study was conducted in Switzerland, involving in-depth interviews with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data. RESULTS: The findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities. CONCLUSION: This study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child's health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy.

A case for preference-sensitive decision timelines to aid shared decision-making in intensive care: need and possible application.

In the intensive care unit, it can be challenging to determine which interventions align with the patients' preferences since patients are often incapacitated and other sources, such as advance directives and surrogate input, are integral. Managing treatment decisions in this context requires a process of shared decision-making and a keen awareness of the preference-sensitive instances over the course of treatment. The present paper examines the need for the development of preference-sensitive decision timelines, and, taking aneurysmal subarachnoid hemorrhage as a use case, proposes a model of one such timeline to illustrate their potential form and value. First, the paper draws on an overview of relevant literature to demonstrate the need for better guidance to (a) aid clinicians in determining when to elicit patient preference, (b) support the drafting of advance directives, and (c) prepare surrogates for their role representing the will of an incapacitated patient in clinical decision-making. This first section emphasizes that highlighting when patient (or surrogate) input is necessary can contribute valuably to shared decision-making, especially in the context of intensive care, and can support advance care planning. As an illustration, the paper offers a model preference-sensitive decision timeline-whose generation was informed by existing guidelines and a series of interviews with patients, surrogates, and neuro-intensive care clinicians-for a use case of aneurysmal subarachnoid hemorrhage. In the last section, the paper offers reflections on how such timelines could be integrated into digital tools to aid shared decision-making.

Comparison of analog and digital patient decision aids for the treatment of depression: a scoping review.

Introduction: Patient decision aids (PDAs) are important tools to empower patients and integrate their preferences and values in the decision-making process. Even though patients with mental health problems have a strong interest in being more involved in decision making about their treatment, research has mainly focused on PDAs for somatic conditions. In this scoping review, we focus on patients suffering from depression and the role of PDAs for this patient group. The review offers an overview of digital and analog PDAs, their advantages and disadvantages as well as recommendations for further research and development. Methods: A systematic search of the existing literature guided by the Cochrane Handbook for Systematic Reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - extension for scoping reviews (PRISMA-ScR) was conducted. Three electronic literature databases with the appropriate thematic focus were searched (PubMed, PsycInfo, and Web of Science). The search strategy used controlled and natural language to search for the key concepts decision aids and depression. The articles were selected in a two-step process guided by predefined inclusion and exclusion criteria. We narratively synthetized information extracted from 40 research articles. Results: We included 40 articles in our review. Our review revealed that there is more focus on digital PDAs in research than in clinical practice. Digitalization can enhance the benefits of PDAs by developing tools that are more efficient, interactive, and personalized. The main disadvantages of both types of PDAs for the treatment of depression are related to time, dissemination, and capacity building for the health care providers. Digital PDAs need to be regularly updated, effective strategies for their dissemination and acceptance need to be identified, and clinicians need sufficient training on how to use digital PDAs. There is more research needed to study which forms of PDAs are most appropriate for various patient groups (e.g., older adults, or patients with comorbidities), and to identify the most effective ways of PDAs' integration in the clinical workflow. The findings from our review could be well aligned with the International Patient Decision Aids Standards. Discussion: More research is needed regarding effective strategies for the implementation of digital PDAs into the clinical workflow, ethical issues raised by the digital format, and opportunities of tailoring PDAs for diverse patient groups.

Advancing the 3Rs: innovation, implementation, ethics and society.

The 3Rs principle of replacing, reducing and refining the use of animals in science has been gaining widespread support in the international research community and appears in transnational legislation such as the European Directive 2010/63/EU, a number of national legislative frameworks like in Switzerland and the UK, and other rules and guidance in place in countries around the world. At the same time, progress in technical and biomedical research, along with the changing status of animals in many societies, challenges the view of the 3Rs principle as a sufficient and effective approach to the moral challenges set by animal use in research. Given this growing awareness of our moral responsibilities to animals, the aim of this paper is to address the question: Can the 3Rs, as a policy instrument for science and research, still guide the morally acceptable use of animals for scientific purposes, and if so, how? The fact that the increased availability of alternatives to animal models has not correlated inversely with a decrease in the number of animals used in research has led to public and political calls for more radical action. However, a focus on the simple measure of total animal numbers distracts from the need for a more nuanced understanding of how the 3Rs principle can have a genuine influence as a guiding instrument in research and testing. Hence, we focus on three core dimensions of the 3Rs in contemporary research: (1) What scientific innovations are needed to advance the goals of the 3Rs? (2) What can be done to facilitate the implementation of existing and new 3R methods? (3) Do the 3Rs still offer an adequate ethical framework given the increasing social awareness of animal needs and human moral responsibilities? By answering these questions, we will identify core perspectives in the debate over the advancement of the 3Rs.

Black box algorithms in mental health apps: An ethical reflection.

Mental health apps bring unprecedented benefits and risks to individual and public health. A thorough evaluation of these apps involves considering two aspects that are often neglected: the algorithms they deploy and the functions they perform. We focus on mental health apps based on black box algorithms, explore their forms of opacity, discuss the implications derived from their opacity, and propose how to use their outcomes in mental healthcare, self-care practices, and research. We argue that there is a relevant distinction between functions performed by algorithms in mental health apps, and we focus on the functions of analysis and generation of advice. When performing analytic functions, such as identifying patterns and making predictions concerning people's emotions, thoughts, and behaviors, black box algorithms can be better than other algorithms to provide information to identify early signs of relapse, support diagnostic processes, and improve research by generating outcomes that lead to a better understanding of mental health. However, when carrying out the function of providing mental health advice, black box algorithms have the potential to deliver unforeseen advice that may harm users. We argue that the outcomes of these apps may be trustworthy as a complementary source of information, but express caution about black box algorithms that give advice directly to users. To reap the benefits of mental health apps based on black box algorithms and avoid unintended consequences, we critically need to know whether these algorithms are fulfilling the function of providing mental health advice.

Blacklisting Health Insurance Premium Defaulters: Is Denial of Medical Care Ethically Justifiable?

Rising health insurance costs and the cost of living crisis are likely leading to an increase in unpaid health insurance bills in many countries. In Switzerland, a particularly drastic measure to sanction defaulting insurance payers is employed. Since 2012, Swiss cantons - who have to cover most of the bills of defaulting payers - are allowed by federal law to blacklist them and to restrict their access to medical care to emergencies.In our paper, we briefly describe blacklisting in the context of the Swiss healthcare system before we examine the ethical issues involved in light of what is known about its social and health impacts. We found no evidence that blacklisting serves as an effective way of recovering unpaid health insurance contributions or of strengthening solidarity within the health insurance system. Furthermore, the ambiguous definitions of what constitutes an emergency treatment and the incompatibility of the denial of medical care with the obligation to provide professional assistance complicate the implementation of blacklists and expose care providers to enormous pressure.Therefore, we conclude that blacklists and the (partial) denial of medical care not only pose profound ethical problems but are also unsuitable for fulfilling the purpose for which they were introduced.

AI model GPT-3 (dis)informs us better than humans.

Artificial intelligence (AI) is changing the way we create and evaluate information, and this is happening during an infodemic, which has been having marked effects on global health. Here, we evaluate whether recruited individuals can distinguish disinformation from accurate information, structured in the form of tweets, and determine whether a tweet is organic or synthetic, i.e., whether it has been written by a Twitter user or by the AI model GPT-3. The results of our preregistered study, including 697 participants, show that GPT-3 is a double-edge sword: In comparison with humans, it can produce accurate information that is easier to understand, but it can also produce more compelling disinformation. We also show that humans cannot distinguish between tweets generated by GPT-3 and written by real Twitter users. Starting from our results, we reflect on the dangers of AI for disinformation and on how information campaigns can be improved to benefit global health.

Mental health services in the metaverse: potential and concerns.

No abstract available.

Association between the colorectal cancer screening status of primary care physicians and their patients: Evidence from the Swiss Sentinella practice-based research network.

Swiss health insurance reimburses screening for colorectal cancer (CRC) with either colonoscopy or fecal occult blood test (FOBT). Studies have documented the association between a physician's personal preventive health practices and the practices they recommend to their patients. We explored the association between CRC testing status of primary care physicians (PCP) and the testing rate among their patients. From May 2017 to September 2017, we invited 129 PCP who belonged to the Swiss Sentinella Network to disclose their CRC test status and whether they had been tested with colonoscopy or FOBT/other methods. Each participating PCP collected demographic data and CRC testing status from 40 consecutive 50- to 75-year-old patients. We analyzed data from 69 (54%) PCP 50 years or older and 2623 patients. Most PCP were men (81%); 75% were tested for CRC (67% with colonoscopy and 9% with FOBT). Mean patient age was 63; 50% were women; 43% had been tested for CRC (38%, 1000/2623 with colonoscopy and 5%, 131/2623, with FOBT or other non-endoscopic test). In multivariate adjusted regression models that clustered patients by PCP, the proportion of patients tested for CRC was higher among PCP tested for CRC than among PCP not tested (47% vs 32%; OR 1.97; 95% CI 1.36 to 2.85). Since PCP CRC testing status is associated with their patients CRC testing rates, it informs future interventions that will alert PCPs to the influence of their health decisions and motivate them to further incorporate the values and preferences of their patients in their practice.

Coercion in intensive care, an insufficiently explored issue-a scoping review of qualitative narratives of patient's experiences.

Purpose: The use of coercion, in a clinical context as imposing a measure against a patient's opposition or declared will, can occur in various forms in intensive care units (ICU). One prime example of a formal coercive measure in the ICU is the use of restraints, which are applied for patients' own safety. Through a database search, we sought to evaluate patient experiences related to coercive measures. Results: For this scoping review, clinical databases were searched for qualitative studies. A total of nine were identified that fulfilled the inclusion and the CASP criteria. Common themes emerging from the studies on patient experiences included communication issues, delirium, and emotional reactions. Statements from patients revealed feelings of compromised autonomy and dignity that came with a loss of control. Physical restraints were only one concrete manifestation of formal coercion as perceived by patients in the ICU setting. Conclusion: There are few qualitative studies focusing on patient experiences of formal coercive measures in the ICU. In addition to the experience of restricted physical movement, the perception of loss of control, loss of dignity, and loss of autonomy suggests that restraining measures are just one element in a setting that may be perceived as informal coercion.

Patient narratives - a still undervalued resource for healthcare improvement.

In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.