Equitable inclusion of racialised communities in genomic research: a scoping review
Notice bibliographique
Résumé
OBJECTIVES: Genome Canada has committed significant resources to ensure that racialised groups are included in its initiatives; however, specific equity considerations related to engaging these communities in human genomic research continue to require deeper attention and exploration. This scoping review aims to widen the frame of analysis concerning inclusive human genomics by undertaking a synthesis that includes perspectives from genomicists, decision and policymakers, legal experts in bioethics and leaders from racialised communities. DESIGN: We conducted a comprehensive scoping review using the Arksey and O'Malley framework to examine the equitable participation of racialised communities in human genomic research. ELIGIBILITY CRITERIA: Our goal was to identify the barriers preventing these populations from equally participating in human genomic research. The review focused on studies from five countries: Canada, the USA, the UK, Australia and New Zealand which have similar immigration patterns and have received racialised populations from from some of the same communities around the globe. These features makes studying these particular countries germane to studying the common challenges they face in human genomics research. DATA SOURCES: Our scoping review examined both academic and grey literature, including MEDLINE, EMBASE, PsycINFO (inception to 11 June 2025), CINAHL (to 12 June 2025) and Cochrane Central Register of Controlled Trials (CENTRAL) (to 19 June 2025), as well as Google Scholar and OAISter (October, 2023). DATA EXTRACTION AND SYNTHESIS: Data were analysed using Braun and Clarke's thematic synthesis guidelines. These included familiarisation with the relevant texts in the selected articles, generating initial codes using an inductive approach, reviewing potential themes and finalising the themes based on the consensus of the research team. RESULTS: The study identified key barriers and facilitators to participation in human genomic research among racialised communities. The first theme (exclusion) highlighted obstacles such as a lack of transportation, limited knowledge of genetics and distrust stemming from concerns of stigmatisation and health disparities. The second theme (diversity of positions) described varied perceptions influenced by cultural values and motivations, with preferences for transparency and autonomy in research participation. Finally, the third theme (equity in genetic research) outlined the limited use of community-based participatory models and biobanking, underscoring the need for more inclusive and equitable research practices to fully engage racialised communities. CONCLUSION: Future research should prioritise strategies of authentic engagement with racialised communities to enhance both inclusivity and equity in genetic, human genomic, precision medicine and precision health research.
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 enseignantsNi 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.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,007 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,002 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,002 | 0,014 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
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.
score_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 découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».