This article’s aim is to understand if and how the efforts to accumulate and organize clinical data transformed the regulation of pharmaceutical care. The authors analyze how the employment of databases by collectives of physicians and researchers shape both clinical and policy practice—and thereby reshape the relation between clinical work and policy. Since the late 1990s, Dutch government has supported the development of clinical databases for specific expensive medicines to gain oversight about actual medicine use. To be able to produce (...) evidence for appropriate medicine use, the collectives set regulations in clinical practice. These internal regulations provide a framework for establishing “appropriate medicine use”, steering reimbursement decisions. However, internal regulation and policy rules differ in how quickly they can change. While the employment of databases in clinical practices results in a constant adjustment of the protocols, policy makers require the databases to provide for static moments of “proven appropriate medicine use” in order to account for and define a fixed and closed formulary. Subsequently, the employment of the databases did not deliver on the promise of oversight and control due to different clinical and policy requirements. Nevertheless, the databases did stimulate appropriate medicine use and reimbursement in clinical practice. (shrink)

In recent years, the healthcare field welcomed an emerging field of practices captured under the umbrella term ‘Big Data’. This term is surrounded with positive rhetoric and promises about the ability to analyse real-world data quickly and comprehensively. Such rhetoric is highly consequential in shaping debates on Big Data. While the fields of Science and Technology Studies and Critical Data Studies have been instrumental in elaborating the neglected and problematic dimensions of Big Data, it remains an open question how and (...) to what extent such insights become embedded in other fields. In this paper, we analyse the epistemological claims that accompany Big Data in the healthcare domain. We systematically searched scientific literature and selected 206 editorials as these reflect on developments in the domain. Through an interpretive analysis, we construct five ideal-typical discourses that all frame Big Data in specific ways. Three of the discourses frame Big Data in positive terms and disseminate a compelling rhetoric. Metaphors of ‘capturing’, ‘illuminating’ and ‘harnessing’ data presume that Big Data are benign and leading to valid knowledge. The scientist and critical-interpretive discourses question the objectivity and effectivity claims of Big Data. Metaphors of ‘selecting’ and ‘constructing’ data illustrate another political message, framing Big Data as limited. We conclude that work in the critical-interpretive discourse has not broadly infiltrated the medical domain. Ways to better integrate aspects of the discourse in the healthcare domain are urgently needed. (shrink)

Recent buzzes around big data, data science and artificial intelligence portray a data-driven future for healthcare. As a response, Europe's key players have stimulated the use of big data technologies to make healthcare more efficient and effective. Critical Data Studies and Science and Technology Studies have developed many concepts to reflect on such overly positive narratives and conduct critical policy evaluations. In this study, we argue that there is also much to be learned from studying how professionals in the healthcare (...) field affectively engage with this strong European narrative in concrete big data projects. We followed twelve hospital-based big data pilots in eight European countries and interviewed 145 professionals between 2018 and 2020. In this study, we introduce the metaphor of dreams to describe how professionals link the big data promises to their own frustrations, ideas, values and experiences with healthcare. Our research answers the question: how do professionals in concrete data-driven initiatives affectively engage with European Union's data hopes in their ‘dreams’ – and with what consequences? We describe the dreams of being seen, of timeliness, of connectedness and of being in control. Each of these dreams emphasizes certain aspects of the grand narrative of big data in Europe, makes particular assumptions and has different consequences. We argue that including attention to these dreams in our work could help shine an additional critical light on the big data developments and stimulate the development of responsible data-driven healthcare. (shrink)

BackgroundEgg freezing has emerged as a technology of assisted reproductive medicine that allows women to plan for the anticipated loss of fertility and hence to preserve the option to conceive with their own eggs. The technology is surrounded by value-conflicts and is subject to ongoing discussions. This study aims at contributing to the empirical-ethical debate by exploring women’s viewpoints on egg freezing in Austria, where egg freezing for social reasons is currently not allowed.MethodsQ-methodology was used to identify prevailing viewpoints on (...) egg freezing. 46 female participants ranked a set of 40 statements onto a 9-column forced choice ranking grid according to the level of agreement. Participants were asked to explain their ranking in a follow-up survey. By-person factor analysis was used to identify distinct viewpoints which were interpreted using both the quantitative and the qualitative data.ResultsThree distinct viewpoints were identified:(1) “women should decide for themselves”,(2) “we should accept nature but change policy”, and (3) “we need an informed societal debate”. These viewpoints provide insights into how biomedical innovations such as egg freezing are perceived by women in Austria and illustrate the normative tensions regarding such innovations.ConclusionsAcknowledging the different prioritizations of values regarding assisted reproductive technologies is important to better understand the underlying normative tensions in a country where egg freezing for social reasons is currently not allowed. The study adds new empirical insights to the ongoing debate by outlining and discussing viewpoints of those directly affected: women. Following up on the lay persons perspective is particularly important in the context of future biomedical innovations that may challenge established norms and create new tensions. It therefore also adds to the societal debate and supports evidence-informed policy making in that regard. (shrink)

Recent medical informatics and sociological literature has painted the image of a new type of patient—one that is reflexive and informed, with highly specified information needs and perceptions, as well as highly developed skills and tactics for acquiring information. Patients have been re-named “reflexive consumers.” At the same time, literature about the questionable reliability of web-based information has suggested the need to create both user tools that have pre-selected information and special guidelines for individuals to use to check the individual (...) characteristics of the information they encounter. In this article, we examine suggestions that individuals must be assisted in developing skills for “reflexive consumerism” and what these particular skills should be. Using two types of data (discursive data from websites and promotional items, and supplementary data from interviews and ethnographic observations carried out with those working to sustain these initiatives), we examine how users are directly addressed and discussed. We argue that these initiatives prescribe skills and practices that extend beyond finding and assessing information on the internet and demonstrate that they include ideals of consumerism and citizenship. (shrink)

Egg freezing has led to heated debates in healthcare policy and bioethics. A crucial issue in this context concerns the distinction between “medical” and “social” egg freezing —contrasting objections to bio-medicalization with claims for oversimplification. Yet such categorization remains a criterion for regulation. This paper aims to explore the “regulatory boundary-work” around the “medical”–”social” distinction in different egg freezing regulations. Based on systematic documents’ analysis we present a cross-national comparison of the way the “medical”–”social” differentiation finds expression in regulatory frameworks (...) in Austria, Germany, Israel, and the Netherlands. Findings are organized along two emerging themes: the definition of MEF and its distinctiveness—highlighting regulatory differences in the clarity of the definition and in the medical indications used for creating it ; and hierarchy of medical over social motivations reflected in usage and funding regulations. Blurred demarcation lines between “medical” and “social” are further discussed as representing a paradoxical inclusion of SEF while offering new insights into the complexity and normativity of this distinction. Finally, we draw conclusions for policymaking and the bioethical debate, also concerning the related cryopolitical aspects. (shrink)

Une enigme litteraire - celle, posee par les textes prefaciels de Vitruve dans leur signification et leur date - qui se resout par une histoire de mots, l'histoire des mots latins du livre, dont la langue francaise et nombre de langues ...

Abstract : This introduction to a special issue on "Normes and normativity" emphasizes the difficulties and challenges of distinguishing between a positive approach and a normative approach to norms in economics. Collective life is organized by norms, however the mere fact that they regularly influence behaviours does not imply their desirability. A strict description of norms may require consideration of ethical issues, which may be reported by different methods; choosing among norms however is an activity of a fundamentally normative nature, (...) which questions the legitimacy of decisions and evaluations. The very possibility of a demarcation between is and ought is not straightforward. In welfare economics in particular, the standard approaches that aim to avoid value judgements (welfarism) or to isolate them (axiomatics) can be problematic. To conclude, we present the four articles in the special issue meant to illustrate these issues regarding the nature, knowledge, value of norms and the positive-normative distinction. -/- Résumé : Cette introduction à un dossier thématique sur le thème "Normes et normativité" insiste sur les difficultés et les enjeux de la distinction entre les approches positives et normatives des normes en économie. La vie collective est organisée par des normes, mais qu’elles ordonnent les comportements dans les faits n’impliquent pas qu’elles soient désirables. Une stricte description des normes peut nécessiter de prendre en compte les questions éthiques, lesquelles peuvent être traduites par différentes méthodes ; choisir les normes en revanche est une activité de nature fondamentalement normative, qui interroge la légitimité des décisions et des évaluations. La possibilité même de démarcation entre positif et normatif ne va pas de soi : en particulier en économie du bien-être, les approches standards qui visent à éviter les jugements de valeur (le welfarisme) ou à les isoler (l’axiomatique) peuvent s’avérer problématiques. Pour conclure, nous présentons les quatre articles du numéro qui illustrent ces questionnements relatifs à la nature, la connaissance, la valeur des normes et la distinction entre normatif et positif. (shrink)

In prevention and health promotion interventions, screening methods and risk profile assessments are often used as tools for establishing the interventions’ effectiveness, for the selection and determination of the health status of participants. The role these instruments fulfil in the creation of effectiveness and the effects these instruments have themselves remain unexplored. In this paper, we have analysed the role screening methods and risk profile assessments fulfil as part of prevention and health promotion programmes in the selection, enrolment and participation (...) of participants. Our analysis showed, that screening methods and health risk assessments create effects as they objectify health risks and/or the health status of individuals, i.e., they select the individuals ‘at risk’ and indicate the lifestyle modifications these people are required to make in order to improve their health. Yet, these instruments also reduce the group of participants thereby decreasing the possible effect of interventions, as they provide the legitimisation for people to make choices to whether they enrol or not and what lifestyle changes they incorporate into their lives. In other words, they present a space of interaction, in which agency is distributed across the practice nurses, the participants and the instruments. Decisions were not just made upon the projection of the outcomes of these instruments; decisions that were made by both the patients and practice nurses were the resultant of their opinions on these outcomes that were formed in interaction with the instruments. (shrink)

El presente escrito pretende explicar la relevancia y actualidad ética del pensamiento personalista comunitario de Emmanuel Mounier contextualizándolo en medio de los desafíos del post-humanismo. De este modo, la exposición se centrará en un primer momento en el mundo actual y la “muerte del ser humano”, para luego detallar en qué consiste el post-humanismo y el personalismo comunitario. Finalmente, se confrontarán las ideas provenientes del post-humanismo con la propuesta de Mounier.

C’est en grande partie grâce à sa connaissance de l’œuvre de la prophétesse Antoinette Bourignon (1616-1680) que le cartésien Pierre Poiret est devenu un fervent défenseur de la mystique. Après leur rencontre en 1676, Poiret devint son disciple le plus dévoué et l’éditeur en chef de ses écrits. Cependant, à l’époque de leur première rencontre il n’était pas du tout prévu qu’il assume ce rôle. En fait, de nouvelles recherches montrent que pendant deux ans, Bourignon a continué à mettre (...) Poiret à l’épreuve. Les épreuves auxquelles Bourignon l’a soumis ne l’ont pas détourné d’elle, ce qui ne fait que montrer à quel point il la croyait vraiment prophétesse de Dieu. Cet article se concentre d’une part sur l’importance de Bourignon pour Poiret, et d’autre part sur la question de son rôle dans la postérité de cette femme mystique. Qu’est-ce qui l’a poussé à passer dix ans de sa vie au service de Bourignon? (shrink)

Il faut saluer la réédition aux Éditions Turquoise de la traduction de Die Waffen nieder!, l’ouvrage antimilitariste de la pacifiste autrichienne Bertha von Suttner, qui, dès sa parution en 1889, devint le best-seller incontesté de la fin du siècle, immédiatement traduit en une vingtaine de langues et en français en 1899. C’est du reste cette traduction, la seule existant à ce jour en langue française, qui est rééditée ici avec la préface d’époque signée par Gaston Moch, dreyfusard de la prem...

Le projet de ce livre était intéressant : faire l’histoire du magazine féminin de la CGT, Antoinette, de sa naissance (1955) à l’interruption de la publication (1989). L’auteur utilise de nouvelles sources, car elle a eu accès aux archives de la CGT, y compris aux notes manuscrites du secrétaire général Henri Krasucki. La partie la plus intéressante est les annexes qui indiquent le tirage, la diffusion (nationale et par département) et le prix de vente du magazine. En effet, la (...) lecture de l’o... (shrink)

Tiré d’un mémoire de maîtrise soutenue à l’Université de Paris I-Panthéon-Sorbonne, sous la direction de Jean-Clément Martin, ici préfacier, Marie-Antoinette et ses biographes. Histoire d’une écriture de la Révolution française, possède les qualités et les défauts de ce type d’exercice. Le titre en est ainsi trompeur, puisqu’il laisse envisager une enquête reposant sur l’ensemble des travaux portant sur la figure historique de Marie-Antoinette. En fait, cinq biographes ont été convoqués et fo...