10 research outputs found

    Épistémologies civiles et institutionnalisation de trois technologies médicales controversées

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    Les nouvelles technologies médicales suscitent régulièrement des controverses scientifiques et sociales. Pour alimenter l’opinion publique, les journalistes utilisent plusieurs sources, incluant des médecins et des associations de patients qui font valoir divers arguments scientifiques, cliniques, sociaux ou fondés sur des histoires vécues. Dans un tel espace de délibération politique, où la science, la clinique et les trajectoires de vies personnelles se côtoient, comment les politiques publiques deviennent-elles légitimes ? Et quels arguments permettent l’institutionnalisation des innovations médicales ? Cet article explore comment les points de vue des spécialistes médicaux, ceux rapportés par la presse écrite et ceux des associations de patients, s’articulent autour de trois cas spécifiques : le dépistage du syndrome de Down, les électrochocs et le dépistage du cancer de la prostate par antigène prostatique spécifique. Pour chacun des cas, une histoire domine et réussit tant bien que mal à forger une direction claire dans laquelle institutionnaliser l’innovation.New medical technologies often spark scientific and social controversy. In order to inform public opinion, journalists use a number of sources, including doctors and associations of patients who put forward various scientific, clinical and social arguments based on real-life experiences. In this arena of political deliberation, where science, clinical aspects and personal trajectories intersect, how do public policies gain legitimacy ? What arguments lead to the institutionalization of medical innovations ? This article examines the viewpoints of medical specialists, associations of patients and the opinions reported in the written press on three specific medical technologies : screening for Down’s syndrome, electroshock therapy, and prostate-specific antigen screening for prostate cancer. It shows how, in each case, a particular narrative somehow succeeds in forging a clear direction where the institutionalization of medical innovation takes place.Las nuevas tecnologías médicas suscitan regularmente controversias científicas y sociales. Para alimentar la opinión pública, los periodistas utilizan varias fuentes, incluyendo médicos y asociaciones de pacientes que presentan diversos argumentos científicos, clínicos, sociales o fundados en historias vividas. En tal espacio de deliberación política donde cohabitan la ciencia, la clínica y las trayectorias de vida personales ¿cómo las políticas públicas llegan a legitimarse ? ¿Y qué argumentos permiten la institucionalización de las innovaciones médicas ? Este artículo explora cómo se articulan los puntos de vista de los especialistas médicos, aquellos presentados por la prensa escrita y las asociaciones de pacientes alrededor de tres casos específicos : el diagnóstico del síndrome de Down, los electrochoques y el diagnóstico del cáncer de la próstata por medio del antígeno prostático específico. En cada uno de los casos domina una historia y logra, mal que bien, forjar una dirección clara en la cual institucionalizar la innovación

    Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios : a study protocol describing a multimedia-based deliberative method

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    Background: The design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design. Methods: The first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey. Discussion: This study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants’ creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations

    The Values Fostered by Health Technology

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    As part of our research team’s knowledge transfer and exchange (KTE) initiatives, we developed a six-minute video-clip to enable productive deliberations among technology developers, clinicians and patient representatives. This video-clip summarises in plain language the valuable goals and features that are embedded in health technology and raises questions regarding the direction that should be taken by health care innovations. The use of such video-clips creates unique opportunities for face-to-face deliberations by enabling participants to interact and debate policy issues that are pivotal to the sustainability of health care systems. In our experience, we found that audiovisual-elicitation-based KTE initiatives can fill an important communication gap among key stakeholders: pondering, from a health care system perspective, why and how certain kinds of medical technologies bring a more valuable response to health care needs when compared to others

    Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios: a study protocol describing a multimedia-based deliberative method

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    Abstract Background The design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design. Methods The first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey. Discussion This study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants’ creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations
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