{"id":2066,"date":"2015-12-10T11:29:13","date_gmt":"2015-12-10T16:29:13","guid":{"rendered":"http:\/\/drupal.test\/projects\/application-des-modulateurs-genetiques-de-la-gravite-de-la-maladie-dans-la-fibrose-kystique-dautres\/"},"modified":"2022-08-18T13:02:10","modified_gmt":"2022-08-18T17:02:10","slug":"application-des-modulateurs-genetiques-de-la-gravite-de-la-maladie-dans-la-fibrose-kystique-dautres","status":"publish","type":"project","link":"https:\/\/genomecanada.ca\/fr\/project\/application-des-modulateurs-genetiques-de-la-gravite-de-la-maladie-dans-la-fibrose-kystique-dautres\/","title":{"rendered":"Application\u00a0des\u00a0modulateurs\u00a0g\u00e9n\u00e9tiques\u00a0de\u00a0la\u00a0gravit\u00e9\u00a0de\u00a0la\u00a0maladie\u00a0 dans\u00a0la\u00a0fibrose\u00a0kystique\u00a0\u00e0\u00a0d’autres\u00a0maladies\u00a0dont\u00a0le\u00a0ph\u00e9notype\u00a0clinique\u00a0pr\u00e9sente\u00a0des\u00a0 similitudes"},"content":{"rendered":"

Le Canada est un chef de file mondial de la recherche sur la fibrose kystique. MM. Peter Durie, p\u00e9diatre et chercheur principal, et Julian Zielenski, g\u00e9n\u00e9ticien \u00e0 l\u2019Institut de recherche de l\u2019H\u00f4pital pour enfants malades de Toronto, pr\u00e9voient utiliser ces atouts en recherche pour examiner la g\u00e9n\u00e9tique d\u2019autres maladies aux ph\u00e9notypes semblables \u2013 des caract\u00e9ristiques physiques observables qui peuvent \u00eatre d\u00e9termin\u00e9es sur le plan g\u00e9n\u00e9tique.<\/p>\n

MM. Durie et Zielenski sont les directeurs du projet intitul\u00e9 Application des modulateurs g\u00e9n\u00e9tiques de la gravit\u00e9 de la maladie dans la fibrose kystique \u00e0 d\u2019autres maladies dont le ph\u00e9notype clinique pr\u00e9sente des similitudes. Ce projet appliquera les connaissances sur les facteurs g\u00e9n\u00e9tiques (appel\u00e9s g\u00e8nes modificateurs) qui influencent la gravit\u00e9 de la fibrose kystique \u00e0 d\u2019autres maladies semblables sur le plan clinique. En font partie la maladie monog\u00e9nique qui affecte le foie (d\u00e9ficience de l\u2019alpha1-antitrypsine) et des \u00e9tats multifactoriels comme la pancr\u00e9atite attribuable \u00e0 l\u2019alcoolisme et la bronchopneumopathie chronique obstructive due au tabagisme.<\/p>\n

L\u2019\u00e9quipe du projet analysera les mutations dans le g\u00e8ne r\u00e9gulateur transmembranaire de la fibrose kystique (CFTR), des g\u00e8nes modificateurs choisis qui influencent la gravit\u00e9 de la maladie chez les patients atteints de fibrose kystique, de m\u00eame que des prot\u00e9ines qui circulent dans le sang afin d\u2019identifier les biomarqueurs des maladies qui peuvent aider \u00e0 pr\u00e9dire la gravit\u00e9 et la progression de la maladie. L\u2019\u00e9quipe du projet mettra au point des tests de diagnostic et de pronostic, et l\u2019identification du risque gr\u00e2ce \u00e0 des tests g\u00e9n\u00e9tiques pourrait mener \u00e0 une modification du comportement et \u00e0 la pr\u00e9vention de la maladie chez les personnes \u00e0 risque. L\u2019alcoolisme et le tabagisme causent d\u2019\u00e9normes souffrances humaines et repr\u00e9sentent des co\u00fbts prohibitifs en soins de sant\u00e9.<\/p>\n

L\u2019\u00e9quipe pr\u00e9voit obtenir des r\u00e9sultats d\u2019importance mondiale, par exemple l\u2019\u00e9laboration de tests g\u00e9n\u00e9tiques pour d\u00e9terminer la susceptibilit\u00e9 \u00e0 la maladie qui serviront dans d\u2019autres projets de recherche et l\u2019\u00e9laboration de strat\u00e9gies de pr\u00e9vention pour modifier le comportement chez les populations \u00e0 risque \u00e9lev\u00e9. Ces r\u00e9sultats pourront ensuite mener \u00e0 une diminution des taux de morbidit\u00e9 et de mortalit\u00e9 et \u00e0 des soins de sant\u00e9 plus efficaces. Des volets importants de ces projets sont les enjeux \u00e9thiques li\u00e9s \u00e0 la recherche en g\u00e9nomique, de m\u00eame que les avantages industriels, \u00e9conomiques et sociaux.<\/p>\n

(En anglais seulement)<\/p>\n

Integrated GE3<\/sup>LS Research: <\/strong>Reporting genetic research results: Perspectives of study participants and researchers
\nGE3<\/sup>LS Project Leaders: <\/strong>Robin Hayeems, University of Toronto<\/p>\n

Summary<\/u>
\nSeveral recent commentaries argue that researchers bear an obligation to report genetic research findings to study participants. The nature and scope of this obligation remains disputed and unresolved. While the principles of respect for persons, reciprocity, and beneficence are fundamental to the research enterprise, they may neither be well served if results are disclosed nor denied if they are not disclosed. This integrated GE3<\/sup>LS research examines study participants\u2019 and researchers\u2019 perspectives on how to manage genetic research results with respect to this putative obligation.<\/p>\n

Phase 1 of this research surveyed research participants from the Canadian Consortium for Cystic Fibrosis research regarding the meaning ascribed to a recent gene modifier finding reported in the academic literature. One key finding was that study participants expect researchers to share genetic research results with them. Phase II of this research involves a complex experimental design that aims to understand the factors influencing researchers\u2019 judgments regarding reporting results. Using a cross sectional factorial survey design that includes vignettes presenting hypothetical scenarios involving genetic research findings to investigators engaged in cystic fibrosis and autism genetics research, this research aims to better understand the factors that influence researchers\u2019 judgments about:<\/p>\n

    \n
  1. Informing individuals about genetic research findings,<\/li>\n
  2. the clinical significance of a hypothetical research finding,<\/li>\n
  3. the nature of a research obligation to re-contact study participants with updated information about a particular finding,<\/li>\n
  4. and the nature of a clinical obligation that may\/may not ensue from reporting research findings.<\/li>\n<\/ol>\n

    Taken together, findings from this integrated research will inform the governance of this important research ethics issue.<\/p>\n","protected":false},"excerpt":{"rendered":"

    Le Canada est un chef de file mondial de la recherche sur la fibrose kystique. MM. Peter Durie, p\u00e9diatre et chercheur principal, et Julian Zielenski, g\u00e9n\u00e9ticien \u00e0 l\u2019Institut de recherche de l\u2019H\u00f4pital pour enfants malades de Toronto, pr\u00e9voient utiliser ces atouts en recherche pour examiner la g\u00e9n\u00e9tique d\u2019autres maladies aux ph\u00e9notypes semblables \u2013 des caract\u00e9ristiques […]<\/p>\n","protected":false},"featured_media":0,"template":"","meta":{"_acf_changed":false,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}}},"project-categories":[93],"genome-competitions":[238],"project-sector":[],"genome_centres":[108],"class_list":["post-2066","project","type-project","status-publish","hentry","project-categories-large-scale-science-fr","genome-competitions-concours-iii","genome_centres-ontario-genomics-fr"],"acf":[],"yoast_head":"\nApplication\u00a0des\u00a0modulateurs\u00a0g\u00e9n\u00e9tiques\u00a0de\u00a0la\u00a0gravit\u00e9\u00a0de\u00a0la\u00a0maladie\u00a0 dans\u00a0la\u00a0fibrose\u00a0kystique\u00a0\u00e0\u00a0d'autres\u00a0maladies\u00a0dont\u00a0le\u00a0ph\u00e9notype\u00a0clinique\u00a0pr\u00e9sente\u00a0des\u00a0 similitudes - GenomeCanada<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/genomecanada.ca\/fr\/project\/application-des-modulateurs-genetiques-de-la-gravite-de-la-maladie-dans-la-fibrose-kystique-dautres\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Application\u00a0des\u00a0modulateurs\u00a0g\u00e9n\u00e9tiques\u00a0de\u00a0la\u00a0gravit\u00e9\u00a0de\u00a0la\u00a0maladie\u00a0 dans\u00a0la\u00a0fibrose\u00a0kystique\u00a0\u00e0\u00a0d'autres\u00a0maladies\u00a0dont\u00a0le\u00a0ph\u00e9notype\u00a0clinique\u00a0pr\u00e9sente\u00a0des\u00a0 similitudes - GenomeCanada\" \/>\n<meta property=\"og:description\" content=\"Le Canada est un chef de file mondial de la recherche sur la fibrose kystique. 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