Health expectations : an international journal of public participation in health care and health policy
Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review
Por Kim A, Merner B, Taylor M y 7 más.
Contenido en inglés
Resumen
Introduction
The translational nature of genomics highlights the importance of developing a robust genomic data governance framework. To inform the development of such a framework for Australia, we conducted a scoping review to identify genomic data governance and management differences between research and clinical care.
Methods
For this scoping review, four databases were searched and 9528 relevant articles published between January 2013 and October 2024 were identified. After screening, 43 empirical, legal and theoretical/commentary articles were included. The differences reported to affect genomic data governance and management practices across clinical and research settings were extracted and synthesised.