CADASIL is an adult-onset genetic neurodegenerative disease, associated with recurrent strokes (cerebral infarcts) susceptible to generate disabling cognitive and motor related disorders, especially after the age of 50. Although there is currently no cure, the prospect opened up by research into new therapies raises the issue of the participation of asymptomatic carriers of the genetic mutation in the planned clinical trials. Inclusion in the trials will likely presuppose that they accept presymptomatic diagnosis. Our focus is on this at-risk population, described in the literature as being in majority unwilling to know their genetic status. On the basis of findings from a questionnaire survey of people concerned by CADASIL (N=359), carried out as part of the TRT-cSDV project coordinated by the CERVCO, we discuss both what underlies at-risk people's choices to whether or not undergo genetic testing, and what might constitute, in the course of the experience of living with the risk of developing the disease, the tipping point leading people who initially were not interested in presymptomatic diagnosis to finally resort to it. We suggest that, far from being a straightforward and unambiguous journey, the decision process leading to the choices to keep ignoring their genetic status or be diagnosed has mainly to do with the desire to distance themselves from the disease to prevent it from taking over their life, but also with an entanglement between progression in age and the disease making its presence felt, and also their relationship to uncertainty, that bringing the prospect of therapy for CADASIL a step closer may possibly change.

Early action by bystanders is particularly important for the survival of victims, especially in cases of cardiac arrest or airway obstruction. However, few bystanders are willing to perform cardiopulmonary resuscitation (CPR). The use of a live video during emergency calls appears to have a positive effect on the number of CPR performed by bystanders. The objective is to propose and evaluate the relevance of a Living Lab methodology for simulated life-threatening emergency video call situations. The first study aimed at analyzing the process of dealing with out-of-hospital cardiac arrest (OHCA) in an dispatch center and at collecting the needs of the dispatchers. The second study is a pre-test of the Living Lab. The third study is the Living-Lab in which 16 situations of cardiac arrest and airway obstruction are simulated. The simulation includes both a live video and a transmission of a video demonstration of emergency procedures. The measures focus on three areas: the impact of video tools, the development of collaboration within the community, and the evaluation of the method. The first results show that dispatchers have an interest in visualizing the scene with live video, and in broadcasting a live demonstration video when possible. Initial results also show that collaboration within the community is enhanced by the shared simulation and debriefing experiences, clarifying regulation procedures and improving communication. Finally, an iterative development based on the lessons learned, expectations and constraints of each previous study, promotes the existence of a Living Lab aiming at determining the place of live video tools in the sequence of care performed by the dispatchers. The Living Lab offers the opportunity to grasp previously undetected insights and to refine the use of the applications while potentially developing a sense of community among the stakeholders.

This article contributes to exposing inner workings of academic research on Ecosystem Services (ES) and their indicators. A self-reflexive study in a lab of environmental economics for more than two years reveals how previous research on agroecological practices in Europe is reinterpreted in order to identify the delivery of ES. We document the difficulties encountered in the transformation process. We show that ES are operationalized through table-concepts. Two tables are used: the first one to extract data from their initial context and purify them from concepts and concerns in environmental sciences; and the second one to subsequently recomplexify these data into a new context of supply and demand. At the end of this process, the newly generated data have little to do with the scientific context from which they are originally derived. We describe the resistances to these transformations as well as the various strategies we employed to address the difficulties we encountered. By carefully tracing the transformations in our study we show the particular nature of ES, how they selectively rely on concepts from both environmental sciences and economics, and the way they hierarchize and hybridize some of these concepts. While some of our findings may be specific to the context of our study, which has concentrated on European, anthropogenic and agricultural environments, we believe that they provide a unique insight into the nature of ES.

Cet article examine onze discours sur l’écologie et le changement climatique prononcés par des étudiants lors de leurs remises de diplômes (à Centrale Nantes, ENSAIA, AgroParisTech, HEC, ENSAT, Polytechnique, Mines Paris, ESSEC). Il offre une taxonomie des critiques, engagements et sensibilités explicitées dans leurs prises de position. L’analyse, d’inspiration pragmatiste, porte sur les similitudes et différences entre les discours, leur positionnent par rapport à la formation et, enfin, s’arrêtera sur le terme « bifurquer ». L’article retracera la biographie de ce terme, en montrant comment il est politisé, collectivisé, pluralisé, voire déradicalisé dans les différents discours. Cette analyse est complétée par l’étude d’articles de presse sur les discours, en particulier ceux prononcés par Clément Choisne à Centrale Nantes et par les « déserteurs » à AgroParisTech. L’article montre une première ligne de tension autour du positionnement par rapport aux problèmes écologiques : faut-il « s’écarter », « bifurquer », « déserter », « boycotter » ou changer le système de l’ « intérieur » ? Une deuxième ligne de tension est visible entre une vision de l’ingénieur comme figure moderniste - qui contrôle, qui conçoit des solutions et qui évacue toute forme de sentiment - et une vision de l’ingénieur comme une figure écologiste, qui est à l’écoute, doute, prend soin et qui explicite ses sentiments et ses attachements.

The notion of the “expert patient” has become quite prominent in recent years. In many countries, patients are invited to sit on various committees with biomedical specialists to share their expertise on diseases and health problems with various institutions. This situation stands in stark contrast with the medical paternalism that prevailed not so long ago. How did this come to pass? What is the nature of the patient expertise that is being solicited? How have health policies changed as a result? These are the questions that we examine in this article. In light of previous and recent fieldwork that we have done, and a selection of case studies reported in the literature, our objective is to revisit a constellation of notions such as “expert patient,” “lay expert,” “lay expertise,” “experiential knowledge,” and “expert of experience” that are not only analytical tools for STS scholars and social scientists, but also part and parcel of today’s institutional parlance. This article is divided into four sections. In the first section, we focus on the production of experiential knowledge by patient associations. In the second section, we show how they also strive to transform the content of credentialed expertise in order to better align this expertise with their concerns. The third section illustrates “lay expertise in action” and addresses the following questions: What changes do patient associations bring to health policymaking? How do they achieve these changes? In the fourth and last section, we examine the institutionalization of the “expert patient,” which manifests not only in legislation that mandates patient participation, but also in a variety of initiatives implemented by institutions to mobilize patient participation in medical research and health programs. In the conclusion, we suggest a few avenues for future research that may complement the corpus of knowledge on lay expertise on aspects that thus far remain less investigated.

Why research the genetic status of members of a family affected by a hereditary disease and reveal this information to them, particularly when there is no treatment available? On what basis does the individual at risk make the decision of whether or not to find out their genetic status and whether or not to inform their relatives? What are the effects of the presymptomatic diagnosis on those who chose to undergo it? How and to what extent does it change their lives, if at all? These three questions are the starting point for the present overview of the literature on the social and ethical issues of presymptomatic diagnosis. The analysis is based on a corpus of 57 articles and 7 reports gathered from Scopus, Cairn and the websites of various institutions, and identifies two main approaches. The first approach is to consider the decision as a rational process in which the associated risks and benefits are weighed. In a certain way, these risks and benefits have an objective existence, even if they must be assessed subjectively by each individual. In this context, the practitioner is, a priori, as well placed as the individual themself to determine the "right decision", either with them, or possibly in their place. A second approach is to consider that the decision is only one point in a long process which gradually leads people to both incorporate and come to terms with what the illness means in their lives, and how the presymptomatic diagnosis can influence the course of their lives. In this approach, a shared journey is forged between caregivers and the individual, the aim being to explore together the significance the diagnosis can have for them. The issue of clinical trials as a potential motivation for receiving a presymptomatic diagnosis complicates the analysis by revealing long-term collective benefits, in contrast with immediate individual risks. Should this element be considered, and if so how, should this be within the options presented to the individual with a view to a possible presymptomatic diagnosis? The protocols discussed in this review provide useful benchmarks for ethical framing both by and in practice: the relatively long time frame of the procedure, the process of collective exploration of what the decision may imply, and the non-interference of researchers are arguably the main features to retain.

Pourquoi rechercher le statut génétique des membres d'une famille touchée par une maladie héréditaire et leur transmettre cette information, en particulier lorsqu'aucun traitement n'existe ? Sur quelle base une personne concernée prend-elle la décision de savoir ou d'ignorer son statut génétique et d'en informer ou non les membres de sa parentèle ? Quels sont les effets du diagnostic présymptomatique sur les personnes concernées ; de quelle manière cela transforme-t-il ou pas leur existence ? Ces trois questions sont au point de départ de la revue de la littérature sur les enjeux sociaux et éthiques du diagnostic présymptomatique, dont ce texte présente une synthèse. L’analyse porte sur un corpus de 57 articles et 7 rapports collectés sur Scopus, Cairn et les sites internet d’institutions. Elle distingue deux approches principales. La première consiste à considérer la décision comme un processus rationnel dans lequel sont pesés les risques et les bénéfices associés, lesquels ont en quelque sorte une existence objective même s’ils doivent s’apprécier de manière spécifique pour chaque personne concernée. Dans cette configuration, le praticien est a priori aussi bien placé que la personne concernée pour déterminer la “bonne décision”, avec lui ou éventuellement à sa place. Une seconde approche consiste à considérer que la décision n’est qu’un point dans un long processus qui amène peu à peu les personnes à réaliser au double sens du terme – prendre conscience de, rendre réel – ce que signifie cette maladie dans leur vie et la manière dont le diagnostic présymptomatique peut en infléchir le cours. Dans cette approche, il se construit un cheminement partagé entre les soignants et les personnes concernées dont la finalité est d’explorer ensemble la signification que peut revêtir le diagnostic. La question des essais cliniques comme potentielle motivation pour la réalisation d’un diagnostic présymptomatique vient complique l’analyse en faisant apparaître des bénéfices collectifs de long terme face à des risques individuels immédiats. Cet élément doit-il être intégré, et si oui comment, dans les parcours proposés aux personnes concernées en vue d’un éventuel diagnostic présymptomatique ? Les protocoles discutés dans cette revue fournissent des points de repère utiles quant à un cadrage éthique par et dans les pratiques : l’inscription dans un temps relativement long de la procédure, le processus d’exploration collective de ce que peut impliquer la décision, et la non interférence des chercheurs paraissent être des principes à retenir.

The aim of this synthesized literature review is to provide an overview of patient-reported outcomes (PROs), a term we use to refer to both health outcomes reported directly by patients, and the tools used for their collection and measurement. Developed from the 2000s onwards, PROs have multiplied as their uses have diversified. We review approximately 50 articles authored by clinical researchers, public health physicians, and to a lesser extent, health economists, as well as approximately 10 practice guidelines distributed by public agencies, research consortia, and think tanks that develop PROs. The overview begins with descriptions of a few historical milestones that reveal the decisive role played by the FDA in the use of PROs when reviewing new treatments tested in clinical trials. These descriptions are followed by a formal definition of PROs that has now been adopted by most of the parties involved. The review continues with a focus on the different categories of PROs developed over the last two decades, well beyond the framework of clinical trials alone. Finally, it addresses recent debates on the capacity of PROs to collect and measure patient experiences, the methodological issues involved in the design of these tools, and in particular, the participation of patient organizations in the construction of PROs that better reflect the specific concerns of the people affected.

Les Patient-Reported Outcomes (PRO) et les Patient-Reported Outcomes Measurements (PROM) sont des outils de collecte et de mesure de l’état de santé des patients, dont la particularité est d’établir ces mesures sur la base des déclarations des patients. Développés à partir des années 2000, les PRO et PROM se sont multipliés à mesure que leurs usages se sont diversifiés. Cette synthèse d’une revue de la littérature basée sur une sélection d’une cinquantaine d’articles de chercheurs-cliniciens, de médecins de santé publique et, dans une moindre mesure, d’économistes de la santé, ainsi qu’une dizaine de guides de bonnes pratiques diffusés par les agences publiques, les consortia de recherche et les think tank qui élaborent des PRO vise à dresser un panorama de ces outils et des discussions qu’ils suscitent. Le panorama débute par quelques repères historiques permettant de saisir le rôle décisif joué par la FDA dans le recours au PRO dans l’évaluation des nouveaux traitements testés dans le cadre des essais cliniques, puis dans une définition formelle des PRO aujourd’hui reprise par la plupart des acteurs impliqués. Il se poursuit en s’intéressant aux différentes catégories de PRO développées depuis deux décennies bien au-delà du seul cadre des essais cliniques. Enfin sont abordés les récents débats sur la capacité des PRO à collecter et mesurer l’expérience des patients, les enjeux méthodologiques de la conception de ces outils, notamment celui de la participation des organisations de patients dans la construction de PRO davantage centrés sur les préoccupations des personnes concernées.