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.

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.

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.

Concerns Around Opposition to the Green Pass in Italy: Social Listening Analysis by Using a Mixed Methods Approach.

BACKGROUND: The recent introduction of COVID-19 certificates in several countries, including the introduction of the European green pass, has been met with protests and concerns by a fraction of the population. In Italy, the green pass has been used as a nudging measure to incentivize vaccinations because a valid green pass is needed to enter restaurants, bars, museums, or stadiums. As of December 2021, a valid green pass can be obtained by being fully vaccinated with an approved vaccine, recovered from COVID-19, or tested. However, a green pass obtained with a test has a short validity (48 hours for the rapid test, 72 hours for the polymerase chain reaction test) and does not allow access to several indoor public places. OBJECTIVE: This study aims to understand and describe the concerns of individuals opposed to the green pass in Italy, the main arguments of their discussions, and their characterization. METHODS: We collected data from Telegram chats and analyzed the arguments and concerns that were raised by the users by using a mixed methods approach. RESULTS: Most individuals opposing the green pass share antivaccine views, but doubts and concerns about vaccines are generally not among the arguments raised to oppose the green pass. Instead, the discussion revolves around the legal aspects and the definition of personal freedom. We explain the differences and similarities between antivaccine and anti-green pass discourses, and we discuss the ethical ramifications of our research, focusing on the use of Telegram chats as a social listening tool for public health. CONCLUSIONS: A large portion of individuals opposed to the green pass share antivaccine views. We suggest public health and political institutions to provide a legal explanation and a context for the use of the green pass, as well as to continue focusing on vaccine communication to inform vaccine-hesitant individuals. Further work is needed to define a consensual ethical framework for social listening for public health.

COVID-19 and the ethics of quarantine: a lesson from the Eyam plague.

The recent outbreak of the SARS-CoV-2 coronavirus is posing many different challenges to local communities, directly affected by the pandemic, and to the global community, trying to find how to respond to this threat in a larger scale. The history of the Eyam Plague, read in light of Ross Upshur's Four Principles for the Justification of Public Health Intervention, and of the Siracusa Principles on the Limitation and Derogation Provisions in the International Covenant on Civil and Political Rights, could provide useful guidance in navigating the complex ethical issues that arise when quarantine measures need to be put in place.

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.

Exploring the role of AI in classifying, analyzing, and generating case reports on assisted suicide cases: feasibility and ethical implications.

This paper presents a study on the use of AI models for the classification of case reports on assisted suicide procedures. The database of the five Dutch regional bioethics committees was scraped to collect the 72 case reports available in English. We trained several AI models for classification according to the categories defined by the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act. We also conducted a related project to fine-tune an OpenAI GPT-3.5-turbo large language model for generating new fictional but plausible cases. As AI is increasingly being used for judgement, it is possible to imagine an application in decision-making regarding assisted suicide. Here we explore two arising questions: feasibility and ethics, with the aim of contributing to a critical assessment of the potential role of AI in decision-making in highly sensitive areas.

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.

Privacy, Data Sharing, and Data Security Policies of Women's mHealth Apps: Scoping Review and Content Analysis.

BACKGROUND: Women's mobile health (mHealth) is a growing phenomenon in the mobile app global market. An increasing number of women worldwide use apps geared to female audiences (female technology). Given the often private and sensitive nature of the data collected by such apps, an ethical assessment from the perspective of data privacy, sharing, and security policies is warranted. OBJECTIVE: The purpose of this scoping review and content analysis was to assess the privacy policies, data sharing, and security policies of women's mHealth apps on the current international market (the App Store on the Apple operating system [iOS] and Google Play on the Android system). METHODS: We reviewed the 23 most popular women's mHealth apps on the market by focusing on publicly available apps on the App Store and Google Play. The 23 downloaded apps were assessed manually by 2 independent reviewers against a variety of user data privacy, data sharing, and security assessment criteria. RESULTS: All 23 apps collected personal health-related data. All apps allowed behavioral tracking, and 61% (14/23) of the apps allowed location tracking. Of the 23 apps, only 16 (70%) displayed a privacy policy, 12 (52%) requested consent from users, and 1 (4%) had a pseudoconsent. In addition, 13% (3/23) of the apps collected data before obtaining consent. Most apps (20/23, 87%) shared user data with third parties, and data sharing information could not be obtained for the 13% (3/23) remaining apps. Of the 23 apps, only 13 (57%) provided users with information on data security. CONCLUSIONS: Many of the most popular women's mHealth apps on the market have poor data privacy, sharing, and security standards. Although regulations exist, such as the European Union General Data Protection Regulation, current practices do not follow them. The failure of the assessed women's mHealth apps to meet basic data privacy, sharing, and security standards is not ethically or legally acceptable.

A Novel Risk and Crisis Communication Platform to Bridge the Gap Between Policy Makers and the Public in the Context of the COVID-19 Crisis (PubliCo): Protocol for a Mixed Methods Study.

BACKGROUND: Since the end of 2019, COVID-19 has had a significant impact on people around the globe. As governments institute more restrictive measures, public adherence could decrease and discontent may grow. Providing high-quality information and countering fake news are important. However, we also need feedback loops so that government officials can refine preventive measures and communication strategies. Policy makers need information-preferably based on real-time data-on people's cognitive, emotional, and behavioral reactions to public health messages and restrictive measures. PubliCo aims to foster effective and tailored risk and crisis communication as well as provide an assessment of the risks and benefits of prevention and control measures, since their effectiveness depends on public trust and cooperation. OBJECTIVE: Our project aims to develop a tool that helps tackle the COVID-19 infodemic, with a focus on enabling a nuanced and in-depth understanding of public perception. The project adopts a transdisciplinary multistakeholder approach, including participatory citizen science. METHODS: We aim to combine a literature and media review and analysis as well as empirical research using mixed methods, including an online survey and diary-based research, both of which are ongoing and continuously updated. Building on real-time data and continuous data collection, our research results will be highly adaptable to the evolving situation. RESULTS: As of September 2021, two-thirds of the proposed tool is operational. The current development cycles are focusing on analytics, user experience, and interface refinement. We have collected a total of 473 responses through PubliCo Survey and 22 diaries through PubliCo Diaries. CONCLUSIONS: Pilot data show that PubliCo is a promising and efficient concept for bidirectional risk and crisis communication in the context of public health crises. Further data are needed to assess its function at a larger scale or in the context of an issue other than COVID-19. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33653.

Making sense in the flood. How to cope with the massive flow of digital information in medical ethics.

Scientific publications have become the currency of Academia, hence the concept of 'publish or perish'. But there are consequences: the amount of existing literature and its proliferation rate have reached the point where keeping pace is just impossible. If this is true in general, it becomes a huge issue in interdisciplinary fields such as bioethics where knowing the state of the art in more than one single discipline is a concrete necessity. If we accept the idea of building new science on an exhaustive comprehension of existing knowledge, a radical change is needed. Smart iterative search strategies, frequency analysis and text mining, techniques described in this paper, can't be a long run solution. But they might serve as a useful coping strategy.