Update introductory What is FEGA? section #97
Merged
Conversation
This file contains hidden or bidirectional Unicode text that may be interpreted or compiled differently than what appears below. To review, open the file in an editor that reveals hidden Unicode characters.
Learn more about bidirectional Unicode characters
This text was out of date and not matching newly approved mission, vision and values statement. Addresses issue #96
We no longer refer to CEGA as a "Node". Only FEGA Nodes (e.g. national nodes) will have that name
M-casado
requested changes
Dec 8, 2025
Collaborator
M-casado
left a comment
M-casado
left a comment
There was a problem hiding this comment.
LGTM, although I had some minimal suggestions in-line and also:
- It may be intentional, but the definition of "repositories" as opposed to FEGA nodes and such is a bit vague. If we have more documentation describing the hierarchy/governance in FEGA it could be added as a reference.
- We now are more vague as well with the scope of the data:
sensitive human datacould benefit from a(e.g., genomics data, clinical records)or similar. - We're no longer mentioning the jurisdiction/governance rationale at the node/national level. Maybe intentional, but that would also help understand better the "why" FEGA is relevant and was born.
- We're not mentioning the relationship between Central EGA as the discovery point and the nodes. Also related to governance.
- We highlight benefits like FAIRness and reuse of data, but we may want to add more like enhancing reproducibility, accelerating research, enabling secure and efficient management of sensitive data (especially relevant for data silos that use bespoke DTAs and non-standard access methods, like in projects we are part of cough cough).
All in all, just suggestions, but feel free to accept/disregard them.
| Genetic data generated in a healthcare context is subject to more stringent information governance than research data and often must comply with national legislation. To address this need, the Federated EGA provides a network of connected resources to enable transnational discovery of and access to human data for research while also respecting jurisdictional data protection regulations. By providing a solution to emerging challenges around secure and efficient management of human omics and associated data, the Federated EGA fosters data reuse, enables reproducibility, and accelerates biomedical research. | ||
| **Privacy & Trust**: Ensuring privacy of data subjects, security of services and acting with integrity to build community trust. | ||
|
|
||
| **FAIRness**: Driving reuse of data through standardisation of metadata and clear access policies. |
Collaborator
There was a problem hiding this comment.
Suggested change
| **FAIRness**: Driving reuse of data through standardisation of metadata and clear access policies. | |
| **FAIRness**: Driving reuse of data through the implementation of the FAIR principles, including standardisation of metadata and clear access policies. |
| ## What is Federated EGA (FEGA)? | ||
|
|
||
| **The Federated EGA is an ecosystem or network of Federated EGA Nodes. FEGA Nodes constitute the primary global resource for discovery and access of sensitive human omics and associated data, consented for secondary use, through a network of national human data repositories to accelerate disease research and improve human health.** | ||
| **Federated EGA is a global network of repositories enabling secure discovery and access to sensitive human data. Our vision is to accelerate scientific discovery and healthcare breakthroughs by creating the go-to worldwide sensitive human data resource.** |
Collaborator
There was a problem hiding this comment.
Suggested change
| **Federated EGA is a global network of repositories enabling secure discovery and access to sensitive human data. Our vision is to accelerate scientific discovery and healthcare breakthroughs by creating the go-to worldwide sensitive human data resource.** | |
| **Federated EGA is a global network of repositories enabling secure discovery and access to sensitive human data. Our vision is to accelerate scientific discovery and healthcare breakthroughs by creating the go-to global resource for sensitive human data.** |
| Our values are: | ||
|
|
||
| Genetic data generated in a healthcare context is subject to more stringent information governance than research data and often must comply with national legislation. To address this need, the Federated EGA provides a network of connected resources to enable transnational discovery of and access to human data for research while also respecting jurisdictional data protection regulations. By providing a solution to emerging challenges around secure and efficient management of human omics and associated data, the Federated EGA fosters data reuse, enables reproducibility, and accelerates biomedical research. | ||
| **Privacy & Trust**: Ensuring privacy of data subjects, security of services and acting with integrity to build community trust. |
Collaborator
There was a problem hiding this comment.
Suggested change
| **Privacy & Trust**: Ensuring privacy of data subjects, security of services and acting with integrity to build community trust. | |
| **Privacy & Trust**: Ensuring privacy of data subjects and security of services, and acting with integrity to build community trust. |
Collaborator
Author
There was a problem hiding this comment.
Hi Marcos, the text is meant to match the newly approved vision, mission, values statement (approved in September). It's what is currently on the website as well.
https://ega-archive.org/about/projects-and-funders/federated-ega/
This is a quick fix to update this text but more changes will be coming! The text was terribly out of date. I think it's best to make it correct for now and then refine it later. Thanks!
M-casado
approved these changes
Dec 9, 2025
Collaborator
M-casado
left a comment
M-casado
left a comment
There was a problem hiding this comment.
I would say it's okay if this is the approved message, but also probably note the comments down somewhere else, and raise them at the appropriate FEGA forum to be reviewed.
Sign up for free
to join this conversation on GitHub.
Already have an account?
Sign in to comment
Add this suggestion to a batch that can be applied as a single commit.
This suggestion is invalid because no changes were made to the code.
Suggestions cannot be applied while the pull request is closed.
Suggestions cannot be applied while viewing a subset of changes.
Only one suggestion per line can be applied in a batch.
Add this suggestion to a batch that can be applied as a single commit.
Applying suggestions on deleted lines is not supported.
You must change the existing code in this line in order to create a valid suggestion.
Outdated suggestions cannot be applied.
This suggestion has been applied or marked resolved.
Suggestions cannot be applied from pending reviews.
Suggestions cannot be applied on multi-line comments.
Suggestions cannot be applied while the pull request is queued to merge.
Suggestion cannot be applied right now. Please check back later.
Description
Update index.md - What is FEGA?
This text was out of date and not matching newly approved mission, vision and values statement. Addresses issue #96
also removed "Node" from Central EGA in the Table because we no longer refer to CEGA as a "Node"
Motivation and Context
out of date information https://github.com//issues/96How has this been tested?
it looks fine in the preview but I can't seem to deploy my branch and view the page (this happened before and I can't remember the solution)What should reviewers focus on?
check it looks good and no spelling mistakesTypes of changes
Checklist: