10 research outputs found
Épistémologies civiles et institutionnalisation de trois technologies médicales controversées
Les nouvelles technologies mĂ©dicales suscitent rĂ©gulièrement des controverses scientifiques et sociales. Pour alimenter l’opinion publique, les journalistes utilisent plusieurs sources, incluant des mĂ©decins et des associations de patients qui font valoir divers arguments scientifiques, cliniques, sociaux ou fondĂ©s sur des histoires vĂ©cues. Dans un tel espace de dĂ©libĂ©ration politique, oĂą la science, la clinique et les trajectoires de vies personnelles se cĂ´toient, comment les politiques publiques deviennent-elles lĂ©gitimes ? Et quels arguments permettent l’institutionnalisation des innovations mĂ©dicales ? Cet article explore comment les points de vue des spĂ©cialistes mĂ©dicaux, ceux rapportĂ©s par la presse Ă©crite et ceux des associations de patients, s’articulent autour de trois cas spĂ©cifiques : le dĂ©pistage du syndrome de Down, les Ă©lectrochocs et le dĂ©pistage du cancer de la prostate par antigène prostatique spĂ©cifique. Pour chacun des cas, une histoire domine et rĂ©ussit tant bien que mal Ă 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 tecnologĂas mĂ©dicas suscitan regularmente controversias cientĂficas y sociales. Para alimentar la opiniĂłn pĂşblica, los periodistas utilizan varias fuentes, incluyendo mĂ©dicos y asociaciones de pacientes que presentan diversos argumentos cientĂficos, clĂnicos, sociales o fundados en historias vividas. En tal espacio de deliberaciĂłn polĂtica donde cohabitan la ciencia, la clĂnica y las trayectorias de vida personales ÂżcĂłmo las polĂticas pĂşblicas llegan a legitimarse ? ÂżY quĂ© argumentos permiten la institucionalizaciĂłn de las innovaciones mĂ©dicas ? Este artĂculo explora cĂłmo se articulan los puntos de vista de los especialistas mĂ©dicos, aquellos presentados por la prensa escrita y las asociaciones de pacientes alrededor de tres casos especĂficos : el diagnĂłstico del sĂndrome de Down, los electrochoques y el diagnĂłstico del cáncer de la prĂłstata por medio del antĂgeno prostático especĂfico. En cada uno de los casos domina una historia y logra, mal que bien, forjar una direcciĂłn clara en la cual institucionalizar la innovaciĂłn
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
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
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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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
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