Papers by Florence Paterson
Orphanet Journal of Rare Diseases
Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access ... more Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity, etc. While challenges facing the development of drugs for rare diseases are experienced differently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnationally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to firmly established innovation pathways. While deviating from these innovation pathways is difficult, we take the position that doing so is of critical importance. The reason is that the current model of pharmaceutical innovation alone will not deliver the quantity of products needed to address the unmet needs faced by rare disease patients, nor at a price point that is sustainable for healthcare systems. In light of the problems in rare diseases, we hold that re-thinking innovation is crucial and more room should be provi...
The "technopolitics of likelihood": the French National DNA Database (FNAEG) and the comparison of genetic profiles
International audienc
Mapping and Analyzing Patient Organnization Movements on Rare Diseases
The techno-politics of likeliness. The French forensic DNA database (FNAEG) and the comparison of DNA profiles
International audienc
From biosociality to biosocial disruption: Living together - or not - with CADASIL
International audienc
Matérialité et juridicité. À propos du Fichier national automatisé des empreintes génétiques
Droit et société
Le Fichier national automatisé des empreintes génétiques (FNAEG) permet de comparer des profils g... more Le Fichier national automatisé des empreintes génétiques (FNAEG) permet de comparer des profils génétiques aux fins d’identification de l’auteur d’une infraction dans le cadre d’une procédure pénale. Il fait l’objet d’une préoccupation juridique qui ne se résume pas au problème de la preuve. L’article propose d’explorer en quoi consiste cette préoccupation juridique. Nous nous sommes intéressées aux discussions au sein du comité technique du FNAEG sur la confection et le traitement des profils génétiques qui sont comparés et enregistrés au fichier. Dans la perspective des travaux sur la « legal materiality » , nous proposons la notion d’« objets-textes » pour désigner ces profils génétiques et pour montrer le travail entrepris par le comité technique du FNAEG afin de s’assurer de leur qualité à témoigner, dans leur matérialité même, des principes du droit : sécurité juridique, égalité devant la loi, équité dans le traitement des affaires et proportionnalité des moyens aux fins.
HAL (Le Centre pour la Communication Scientifique Directe), 2020
HAL (Le Centre pour la Communication Scientifique Directe), 2020
Capitalization
What does it mean to turn something into capital? What does considering things as assets entail? ... more What does it mean to turn something into capital? What does considering things as assets entail? What does the prevalence of an investor’s viewpoint require? What is this culture of valuation that asks that we capitalize on everything? How can we make sense of the traits, necessities and upshots of this pervasive cultural condition?This book takes the reader to an ethnographic stroll down the trail of capitalization. Start-up companies, research centers, consulting firms, state enterprises, investment banks, public administrations: the territory can certainly prove strange and disorienting at first sight, with its blurred boundaries between private appropriation and public interest, economic sanity and moral breakdown, the literal and the metaphorical, the practical and the ideological. The traveler certainly requires a resolutely pragmatist attitude, and a taste for the meanders of signification. But in all the sites in which we set foot in this inquiry we recognize a recurring semiotic complex: a scenario of valuation in which things signify by virtue of their capacity to become assets in the eye of an imagined investor.A ground-breaking anthropological investigation on the culture of contemporary capitalism, this work directs attention to the largely unexplored problem of capitalization and offers a critical resource for current debates on neoliberalism and financialization
Why research the genetic status of members of a family affected by a hereditary disease and revea... more 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.
Chapter 1. Experience, knowledge and empowerment: the increasing role of patient organizations in staging, weighting and circulating experience and knowledge
The dynamics of patient organizations in Europe, 2008
STATE OF THE ART Vololona Rabeharisoa The role of patient organizations in the staging, weighting... more STATE OF THE ART Vololona Rabeharisoa The role of patient organizations in the staging, weighting and circulating of knowledge and experience data on diseases and healthcare problems has been investigated by several social science disciplines in the past few years. Social scientists have joined patient organizations in calling for a redistribution of power between patients and specialists, in decision-making, which directly concerns patients and involves scientific and technical knowledge. Fo..
Le handicap au quotidien. La personne, les proches, les soignants : sept récits d'expérience à domicile
Rapport dans le cadre d'un contrat de recherche avec la Haute Autorité de la Santé et le CNS
Chapter 2. Patient organizations and the economic and industrial world - Towards new types of relationship?
STATE OF THE ART Vololona Rabeharisoa The literature on patient organizations provides a wealth o... more STATE OF THE ART Vololona Rabeharisoa The literature on patient organizations provides a wealth of examples and analyses attesting to these organizations' significance as social and political actors in the domain of health and medicine. In contrast, few studies have been devoted to their relations with the economic world, although interest in the subject is growing, motivated by two issues: the pharmaceutical industry's funding of patient organizations, and certain organizations' support for ..
Chapter 3. Social and political stakes of associative networks, coalitions, and collectives
STATE OF THE ART Vololona Rabeharisoa It is striking that patient organizations and/or health mov... more STATE OF THE ART Vololona Rabeharisoa It is striking that patient organizations and/or health movements maintain many bonds with one another, both formal and informal, perennial and temporary. These bonds are set in differing configurations, of which three main types can be distinguished. First, certain organizations, especially those which are nation-wide, have structurally affiliated groups representing them at local level. These groups may be relatively autonomous but they are supposed to ..
Maintenir une infrastructure en droit. Le Fichier National Automatisé des Empreintes Génétiques face aux suspects
International audienc
The aim of this synthesized literature review is to provide an overview of patient-reported outco... more 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.
Chapter 4. Working with Patient. Organizations: A Few Institutional Experiences
Involvement of patient and user organizations in public health institution: the case of the Haute... more Involvement of patient and user organizations in public health institution: the case of the Haute Autorité de Santé (HAS) in France Etienne Caniard, HAS The role of patient organizations and users of the health care system has changed considerably over the past two decades. From the pioneering role of Aids organizations to the successful structuring of rare diseases at European level, the reality of non-profit organizations is marked by diversity. In France, Bernard Kouchner, then Minister of..
Sur la trace des suspects
Les fichiers ADN et les techniques d’analyse génétique au service de la police et de la justice o... more Les fichiers ADN et les techniques d’analyse génétique au service de la police et de la justice ont connu un développement spectaculaire depuis les années 1990, notamment en France. Au-delà de ce qu’en montrent les médias et les séries télévisées à succès, quelles sont les pratiques quotidiennes des professionnels confrontés à ces nouvelles techniques ? Comment sont-elles encadrées et au sein de quelles politiques s’inscrivent-elles ? Quels sont les débats et les défis qu’elles soulèvent ? Pour répondre à ces questions, une douzaine de sociologues et de juristes présentent leurs travaux, notamment à partir d’une enquête collective s’étendant sur plus de quatre années. Cet ouvrage est l’un des premiers livres de sciences sociales en français consacrés à ce thème. Il montre que ces évolutions se situent au cœur d’enjeux très actuels : d’une part la place de la science dans la production et l’administration de la preuve ; d’autre part les arbitrages concernant l’équilibre entre le respect des droits individuels et la sécurité des populations ; enfin les techniques récentes et les nouveaux cadres normatifs. En somme, il met en lumière le rôle parfois controversé, mais globalement peu débattu, de l’ADN dans l’établissement des vérités judiciaires, comme miroir et ferment des évolutions contemporaines en matière de sécurité
La greffe de rein en France : la communauté des transplanteurs comme acteur intégrateur
Sociologie du travail, 1992
Nicolas Herpin and Florence Paterson Centralization and Discretionary Power : Kidney Transplants ... more Nicolas Herpin and Florence Paterson Centralization and Discretionary Power : Kidney Transplants in France Toward patients, their families, other physicians and public authorities, the community of surgeons who perform transplants has an integrative role. Prior to the operation, a kidney transplant involves a transaction between donor and donee. As a professional group, French «transplantersº are intermediaries who affect both supply and demand. This twofold activity accounts for the specific way France Transplant works. The transplanters' hegemony, a situation that does not exist in the United States, can paradoxically be explained by the fact that these medical specialists are not self-employed professionals.
Sciences sociales et santé, 2016
Distribution électronique Cairn.info pour John Libbey Eurotext. Distribution électronique Cairn.i... more Distribution électronique Cairn.info pour John Libbey Eurotext. Distribution électronique Cairn.info pour John Libbey Eurotext. La reproduction ou représentation de cet article, notamment par photocopie, n'est autorisée que dans les limites des conditions générales d'utilisation du site ou, le cas échéant, des conditions générales de la licence souscrite par votre établissement. Toute autre reproduction ou représentation, en tout ou partie, sous quelque forme et de quelque manière que ce soit, est interdite sauf accord préalable et écrit de l'éditeur, en dehors des cas prévus par la législation en vigueur en France. Il est précisé que son stockage dans une base de données est également interdit. Article disponible en ligne à l'adresse Article disponible en ligne à l'adresse https://www.cairn.info/revue-sciences-sociales-et-sante-2016-4-page-71.htm Découvrir le sommaire de ce numéro, suivre la revue par email, s'abonner... Flashez ce QR Code pour accéder à la page de ce numéro sur Cairn.info.
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Papers by Florence Paterson