Jul 2026· Canadian Journal of Health Technologies· Vol 6· 0 citations
Abstract
Genomic datasets exist in Canada; however, many are inaccessible because they are held by individual researchers on institutional servers or by third-party sequencing companies abroad.
As a result, the genomic evidence needed to evaluate new therapies is often difficult to find.
Genome Canada is working to improve data accessibility through the Canadian Precision Health Initiative and the Pan-Canadian Genome Library.
The Atlantic Cancer Consortium and Atlantic PATH have also built federated models with formal access processes.
This project aimed to identify and summarize the genomic datasets available for populations in Atlantic Canada, with particular attention to the FAIR (findable, accessible, interoperable, and reusable) principles.
Ted McDonald, Rachelle Entz, Laurence Lambert-Côté et al.· Canadian Journal of Health T...· 0 citations
It is argued that Canada needs to move toward a genomics-informed learning health system for rare disease (RD); one in which diagnosis, care, discovery, and patient outcomes are connected in a continuous cycle of learning.
K. Boycott, E. Price, M. Osmond et al.· Open Access Government· 0 citations
A series of online DFs that were conducted to explore how patients can be involved in the governance of a genomic data archive (GDA), the German Human Genome‐Phenome Archive (GHGA) were evaluated.
Apondo Eric, Schickhardt Christoph, Andrea Züger et al.· Health Expectations· 0 citations
Overall, trust and comprehensive cultural consenting process are critical during data sharing and policymakers should establish ethical and regulatory frameworks that emphasize equity and fairness in collaborative relationships.
Deborah Ekusai-Sebatta, M. Ocan, Shenuka Singh et al.· PLoS ONE· 0 citations
The current legal framework is analyzed, the existing need for legislative action is identified, the existing need for legislative action is identified and a practice-oriented regulatory proposal is developed.
This workshop introduces the new Ensembl Data Platform (https://beta.ensembl.org/), featuring improved visualisation, a modern interface, and access to key resources like HPRC and Darwin Tree of Life.
Unknown authors· 0 citations
We use cookies to run the site and, with your consent, for analytics and to show ads.
See our Cookie Policy.
