Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

Les sciences humaines et sociales face à la pandémie de COVID-19 : une mobilisation extraordinaire.

This contribution presents the dynamics generated by the COVID-19 pandemic since March 2020 in the humanities and social sciences (SHS) in France. It first describes the main elements of the individual and institutional involvement that give this dynamic the characteristics of an "extra-ordinary" mobilization. Based on a collective research report, it goes on presenting the research themes and issues, as well as the methodological and epistemological reflections put forward by the SHS on the subject of the pandemic and its management. This contribution thus gives an account of the way in which the SHS participate in a social and political understanding of health issues. By carrying out research themes and issues that are sometimes new and sometimes deeply rooted in the scientific capital that is theirs concerning health and environmental crises, the SHS bring their contribution to the description and the analysis of the foundations and consequences of these crises on individuals and societies: knowledge likely to enlighten public decision-making.

La fin de vie, enjeu de santé publique : dimensions éthiques d'une question politique.

This paper intends to explore the ethical dimension of end-of-life situations and to shed light on its implications for public health policy. This exploration is based on a contextualized philosophical approach, here in the French context. First, it resituates how the end of life first became an object of public discussion and then of legislation. Later on, it discusses how ethical issues about end-of-life are framed by clinical research and social sciences and humanities, particularly with regard to vulnerable population groups and so-called “difficult” medical decisions. Thirdly, it shows that the analysis must go further, by questioning the key ethical and legal notion of “accompagnement” (support), in order to uncover the debates hidden by the apparent consensus about it. Finally, the ethics of care invites us to question the current limits of public health policies concerning the end of life, with regard to their general meaning, but also to their actual means and the ways they combine private care and public action.

Ethical and social implications of approaching death prediction in humans - when the biology of ageing meets existential issues.

BACKGROUND: The discovery of biomarkers of ageing has led to the development of predictors of impending natural death and has paved the way for personalised estimation of the risk of death in the general population. This study intends to identify the ethical resources available to approach the idea of a long-lasting dying process and consider the perspective of death prediction. The reflection on human mortality is necessary but not sufficient to face this issue. Knowledge about death anticipation in clinical contexts allows for a better understanding of it. Still, the very notion of prediction and its implications must be clarified. This study outlines in a prospective way issues that call for further investigation in the various fields concerned: ethical, psychological, medical and social. METHODS: The study is based on an interdisciplinary approach, a combination of philosophy, clinical psychology, medicine, demography, biology and actuarial science. RESULTS: The present study proposes an understanding of death prediction based on its distinction with the relationship to human mortality and death anticipation, and on the analogy with the implications of genetic testing performed in pre-symptomatic stages of a disease. It leads to the identification of a multi-layered issue, including the individual and personal relationship to death prediction, the potential medical uses of biomarkers of ageing, the social and economic implications of the latter, especially in regard to the way longevity risk is perceived. CONCLUSIONS: The present study work strives to propose a first sketch of what the implications of death prediction as such could be - from an individual, medical and social point of view. Both with anti-ageing medicine and the transhumanist quest for immortality, research on biomarkers of ageing brings back to the forefront crucial ethical matters: should we, as human beings, keep ignoring certain things, primarily the moment of our death, be it an estimation of it? If such knowledge was available, who should be informed about it and how such information should be given? Is it a knowledge that could be socially shared?

"Patient's lived experience" : New insights from the "scene" of deep-brain stimulation medical care.

This editorial presents a special issue gathering four contributions about the patient's lived experience in the context of deep-brain stimulation. It aims at clarifying the meaning of such an experience and its scope for medical practice, the health system and its legal frame.

On prenatal diagnosis and the decision to continue or terminate a pregnancy in France: a clinical ethics study of unknown moral territories.

This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples' motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the interviews conducted with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients' views about the doctor's involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle.

[Reproductive medicine and the « desire for a child ¼: from normative judgment to conceptual analysis]. / Médecine de la procréation et désir d'enfant - De l'évaluation normative à l'analyse conceptuelle.

Reproductive medicine is widely discussed today in France, far beyond the borders of medical community. It is a topic of public controversy. The notion of "desire for a child" is very frequently referred to in this debate. It is wrongly considered as an obvious idea. A philosophical examination of the "desire for a child" allows us to elaborate a critical definition of it, cut from the normative judgments made about it. It highlights its double nature, being a desire linked to the private sphere as well as to public policies and social norms. It gives some reasons to understand how it became something that could be said and even claimed for in the public sphere. It examines the explanations that have been proposed about the desire for a child (its origin, the goal it fulfills). It proposes a frame of analysis based on a case-by-case approach and acknowledges as essential features of this desire its complexity, its ambiguous frontiers and its variability. The normative evaluation of the "desire for a child" cannot skip the phase of this conceptual analysis.

Prenatal diagnosis as a tool and support for eugenics: myth or reality in contemporary French society?

Today, French public debate and bioethics research reflect an ongoing controversy about eugenics. The field of reproductive medicine is often targeted as pre-implantation genetic diagnosis (PGD), prenatal diagnosis, and prenatal detection are accused of drifting towards eugenics or being driven by eugenics considerations. This article aims at understanding why the charge against eugenics came at the forefront of the ethical debate. Above all, it aims at showing that the charge against prenatal diagnosis is groundless. The point of view presented in this article has been elaborated jointly by a geneticist and a philosopher. Besides a survey of the medical, bioethical, philosophical and social sciences literature on the topic, the methodology is founded on a joint analysis of geneticist's various consults. Evidence from office visits demonstrated that prenatal diagnosis leads to case-by-case decisions. As we have suggested, this conclusion does not mean that prenatal diagnosis is devoid of ethical issues, and we have identified at least two. The first is related to the evaluation of a decision to abort. The second line of ethical questions arises from the fact that the claim for "normality" hardly hides normative and ambiguous views about disability. As a conclusion, ethical dilemmas keep being noticeable in the field of reproductive medicine and genetic counselling, but an enquiry about eugenic tendencies probably does not allow us to understand them in the proper way.

Translating Planetary Health Principles Into Sustainable Primary Care Services.

Global anthropogenic environmental degradations such as climate change are increasingly recognized as critical public health issues, on which human beings should urgently act in order to preserve sustainable conditions of living on Earth. "Planetary Health" is a breakthrough concept and emerging research field based on the recognition of the interdependent relationships between living organisms-both human and non-human-and their ecosystems. In that regards, there have been numerous calls by healthcare professionals for a greater recognition and adoption of Planetary Health perspective. At the same time, current Western healthcare systems are facing their limits when it comes to providing affordable, equitable and sustainable healthcare services. Furthermore, while hospital-centrism remains the dominant model of Western health systems, primary care and public health continue to be largely undervalued by policy makers. While healthcare services will have to adapt to the sanitary impacts of environmental degradations, they should also ambition to accompany and accelerate the societal transformations required to re-inscribe the functioning of human societies within planetary boundaries. The entire health system requires profound transformations to achieve this, with obviously a key role for public health. But we argue that the first line of care represented by primary care might also have an important role to play, with its holistic, interdisciplinary, and longitudinal approach to patients, strongly grounded in their living environments and communities. This will require however to redefine the roles, activities and organization of primary care actors to better integrate socio-environmental determinants of health, strengthen interprofessional collaborations, including non-medical collaborations and more generally develop new, environmentally-centered models of care. Furthermore, a planetary health perspective translated in primary care will require the strengthening of synergies between institutions and actors in the field of health and sustainability.

Corrigendum: Translating planetary health principles into sustainable primary care services.

[This corrects the article DOI: 10.3389/fpubh.2022.931212.].

Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.

The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.

The ethics of genomic medicine: redefining values and norms in the UK and France.

This paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context of genomic medicine. This paper leads to three key observations: (1) despite each country's strategy being at a different stage of implementation, the two countries face similar ethical issues; (2) each country tries to solve these issues by (re-)defining individual rights and collective duties in its own way; (3) the social contract presents a useful tool to analyse the ways the UK and France address the ethical challenges raised by genomics. This overview lays the groundwork for future in-depth comparison, and drive collaborative research, between the UK and France.

[Ethical and social consequences of biomarkers that predict impending death in humans]. / Conséquences éthiques et sociales de biomarqueurs prédictifs de la mort chez l'homme - La vieillesse et la mort, problématiques comportementales et sociétales.

Fundamental research on ageing has taken an interesting turn in recent years with the rapid development of biomarkers predicting mortality in model organisms, particularly Drosophila, as well as in humans through improvements in approaches to the identification of circulating molecules in mass. These developments lead to a shift in our ability to predict the occurrence of death from the historically population level to the individual level. We question here the ethical, medical and social implications of this change of scale.

TITLE: Conséquences éthiques et sociales de biomarqueurs prédictifs de la mort chez l'homme - La vieillesse et la mort, problématiques comportementales et sociétales. ABSTRACT: La recherche fondamentale sur le vieillissement a pris un tour intéressant ces dernières années avec un développement rapide des biomarqueurs prédictifs de mortalité chez les organismes modèles, notamment la drosophile, ainsi que chez l'être humain à travers les améliorations des approches d'identification en masse de molécules circulantes. Ces développements conduisent à un déplacement de notre capacité de prédiction de survenue de la mort, du niveau historiquement populationnel au niveau individuel. Nous interrogeons ici les implications éthiques, médicales et sociales de ce changement d'échelle.

The role of 'accompagnement' in the end-of-life debate in France: from solidarity to autonomy.

This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign 'Anglo-American principle'. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term 'accompagnement' allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different.