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Enregistrement W320628399

An Evaluation of G[E.Sup.3]LS Public Engagement Activities

2007· article· en· W320628399 sur OpenAlexvenueaboutno aff
Holly Long

Notice bibliographique

RevueHealth law review · 2007
Typearticle
Langueen
DomaineMedicine
ThématiqueEthics in Clinical Research
Établissements canadiensnon disponible
Organismes subventionnairesnon disponible
Mots-clésPublic engagementScholarshipPublic relationsRepresentativeness heuristicSociologyEconomic JusticePolitical sciencePsychologyLawSocial psychology
DOInon disponible

Résumé

récupéré en direct d'OpenAlex

1. Introduction Public engagement is a significant challenge for many social scientists, physical scientists, and policy makers involved in genetics and genomics research. Despite our commitment to public involvement and extensive research in this area, we continue to struggle with many long standing criticisms (i.e., how to achieve representativeness, sampling biases) and barriers (i.e., public apathy, funding limitations). I argue that evaluating and comparing methods is an effective way to illuminate aspects of various approaches that will help us to ultimately reach our goals. For five weeks this spring, I had the opportunity to conduct research in this area with support from the Stichting Porticus Foundation's Multidisciplinary Human Gene Technology, Research, and Therapy Project Scholarship Programme. (1) My research resulted in a paper in which I discussed the public engagement efforts of the Genetics and Society Project at the University of Montreal [GSP] and The W. Maurice Young Centre for Applied Ethics at the University of British Columbia [CAE]. Each centre is deeply committed to G[E.sup.3]LS (2) public engagement activities. I explored the strengths and limitations of all current engagement activities at each centre by comparing them against sets of pre-determined motivational and evaluation criteria. The following three questions guided this analysis: (1) What truly motivates our public engagement efforts?; (2) How do our projects fare against document review findings and Justice Canada's evaluative criteria? (3); and (3) How can we help each other to better serve our publics? 2. Methods This project involved four tasks. First, a two part literature review was performed in order to compile lists of motivation and evaluation criteria created by government and non-governmental organizations and academic researchers. The HumGen database's Canadian policy statements were also examined. These findings would serve as the basis for the comparative analysis of public engagement activities conducted by the two research centres. Second, GSP public engagement activities were reviewed. Document reviews and informal interviews with members of the GSP team helped to clarify public engagement activities associated with the following projects: The CARTaGENE project; Inherit BRCA; The Sickle -Cell Disease Pilot Project; and Genomics and Public Health (GPH): Building Public Goods? project [GPH]. Third, public engagement activities completed by CAE were analyzed by examining published papers and drawing on my personal knowledge of the projects. (4) CAE G[E.sup.3]LS related activities examined in this analysis included: focus groups and NERD surveys conducted by Dr. Mike Burgess and Dr. Peter Danielson respectively as part of the Democracy, Ethics, and Genomics: Consultation, Deliberation, and Modeling [DEG] project; and the Orchids theatre project led by Dr. Susan Cox and Dr. Jeff Nisker. Finally, a comparative analysis was conducted of each Centres' public engagement efforts according to the evaluation and motivational criteria gathered during the literature review. This analysis provided insight into points of convergence and divergence between GSP and CAE projects and identified opportunities for collaboration. 3. Results It appears that GSP and CAE share many of the same motivational factors for their public engagement activities. (5) The HumGen website and NERD surveys both help individuals to work through complex issues (among other things), and all projects are motivated by a desire to promote public dialogue, create new partnerships, foster civic engagement, and assist in reducing democratic deficits for G[E.sup.3]LS issues. The desire to reduce democratic deficits in G[E.sup.3]LS research and policy is perhaps the strongest motivating factor for all GSP and CAE [GE.sup.3]LS projects. This objective compels researchers at each location to seek out new and innovative ways of engaging individuals who do not typically have the opportunity to participate in G[E. …

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.

Comment cette classification a été obtenuedéplier

Prédiction distillée sur la base complète

Imitation des enseignants

Ni prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.

score de la tête « metaresearch » (Codex)0,105
score de la tête « metaresearch » (Gemma)0,010
Version: codex-gemma-dda1882f352aStatut de validation: machine_predicted_unvalidated
Catégories candidatesMétarecherche
Catégories consensuellesMétarecherche
DomaineSignal candidat: aucune · Signal consensuel: aucune
Devis d'étudeSignal candidat: Sans objet · Signal consensuel: aucune
GenreSignal candidat: Synthèse · Signal consensuel: aucune
Score de désaccord entre enseignants0,923
Score d'incertitude au seuil0,998

Scores Codex et Gemma par catégorie

CatégorieCodexGemma
Métarecherche0,1050,010
Méta-épidémiologie (sens strict)0,0000,000
Méta-épidémiologie (sens large)0,0010,000
Bibliométrie0,0000,000
Études des sciences et des technologies0,0000,000
Communication savante0,0000,000
Science ouverte0,0000,000
Intégrité de la recherche0,0000,001
Charge utile insuffisante (le modèle a refusé de juger)0,0010,000

Scores machine (provisoires)

Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.

Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.

Tête enseignante Opus0,876
Tête enseignante GPT0,732
Écart entre enseignants0,144 · la distance entre les deux têtes enseignantes sur ce seul travail
Statut de validationscore_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle

Classification

machine, non validée

Prédiction automatique; les deux têtes enseignantes s’accordent sur ce qui est montré ici.

Devis d'étudeSans objet
Domainenon disponible
GenreSynthèse

Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».

En bref

Citations0
Publié2007
Routes d'admission2
Résumé présentoui

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