Data Governance Theme Team

Neuroscience Community of Interest

Background

Key Resources

Agendas and Minutes

Meeting: 2025-11-04

Meeting: 2025-09-02

Meeting: 2025-09-02

Meeting: 2025-08-03

Meeting: 2025-06-03

Background

Who are we? 

We are a multidisciplinary group of neuroscience researchers, data stewards, and policy advocates committed to exploring and advancing international data governance frameworks. Our shared goal is to enable ethical, efficient, and secure global data sharing in neuroscience by bridging gaps across national boundaries and regulatory systems.

What do we want to do? 

Our aim is to critically assess the current landscape of neuroscience data governance, identify points of friction and inconsistency throughout the data lifecycle, and develop scalable, internationally harmonized solutions. We strive to co-create tools, policies, and best practices that enhance transparency, trust, and equity in neuroscience data sharing across borders.

What is the problem?

At present, neuroscience lacks cohesive, well-defined data governance frameworks, especially for international collaboration. Diverse legal, ethical, and technical standards across jurisdictions lead to uncertainty, administrative burden, and slowed progress in global research. This fragmentation undermines the full potential of data-driven neuroscience and restricts equitable participation in global initiatives.

How will we achieve success?

We will build success through inclusive, cross-border dialogue and collaboration with researchers, policymakers, data custodians, and participants. Our approach includes:

• Mapping and analyzing existing governance frameworks and their gaps.
  
• Engaging in open consultation with global stakeholders^[a][b] to co-develop shared principles.
  
• Piloting interoperable solutions that respect local contexts while enabling broader integration.
  
• Promoting education and capacity-building around responsible data stewardship.
  By fostering a unified and adaptable approach to data governance, we aim to unlock the full potential of neuroscience research on a global scale.

Key Resources

Agendas and Minutes

Future meeting notes will be available here: Neuroscience Community Meetings

Meeting: 2026-01-16 - Breakout room during neuroscience community meeting

→ Notes:

Explore representing governance in a machine readable way - Could create a working group on a standardized approach to data access requests

• This article can be used as a starting point: https://pubmed.ncbi.nlm.nih.gov/33522661/
• Relevant existing GA4GH tools:

• Consent toolkit
• Consent policy 
• Machine readable consent guidance 
• Data Passports 
• Researcher Passports
• Data use ontology (duo)
• Getting your DUCs in a row 

• Getting your DUCs in a row - standardising the representation of Digital Use Conditions, Jeanson et al. https://www.nature.com/articles/s41597-024-03280-6
• Common conditions of use elements. Atomic concepts for consistent and effective information governance, Gonzalez et al. https://www.nature.com/articles/s41597-024-03279-z

• DUO is an ontology to define the terms, DUC is the data structure to encapsulate  those terms and apply the rules on them
• Francis to discuss this with Tom Connor
• Potential collaborators within REWS: https://www.ga4gh.org/work_stream/regulatory-ethics/ 

→ Next steps:

• Connect Francis with Tom Conner and Jonathan Lawson
• Plan a joint data harmonization and data governance meeting with Francis leading

• Could form a working group based on this
• Could bring in REWS to share tools and experience with what worked/what didn’t

• Formalize proposal for Connect - JB to reach out to local groups about engaging

Meeting: 2025-11-04

Attendees:  Kim Ray, Cyril Pernet, Kyle Weber, Kaitlyn Brethour, Kelly Shen, Blaire Porter, Marietjie Botes

Meeting Recording: Passcode: 4C%D*puY

Actions:

• DG doc final steps: Identify Australia data governance documents

• Marietjie will follow up with a colleague on this
• University of Sydney has a database of 19000 MS patients
• Kelly will reach out to MAc Shine and colleagues for an updated DUA

• Explore having a representative from ABCD or HBCD present on their DG policies
• Contact Steve Smith from UK Biobank to understand the changes in their data access policies and the rationale behind them.

Summary:

The Neuro Community Data Governance Theme Team discussed data governance challenges, particularly in Europe, where regulations like GDPR influence data sharing. Cyril Pernet detailed Public Neuro's flexible system, which allows for custom data user agreements and metadata transparency. The team highlighted issues with institutional legal barriers, especially in the U.S., where standard contractual clauses often hinder data access. They proposed better communication with legal offices and suggested reaching out to experts in Australia and other regions for additional insights. The meeting concluded with plans to gather more data governance documents and explore potential guest speakers for future discussions.

Overview of Public Neuro's Data Governance

• Cyril Pernet begins discussing Public Neuro's data governance, mentioning the need to share his screen.
• Cyril explains the overall governance structure, including the oversight committee, data protection officer, and Management Committee.
• Public Neuro is a non-profit organization managed by Cyril's lab, with input from various experts and institutions.
• The repository allows for flexible data sharing, with each dataset having its own regulation based on consent forms and national regulations.

Challenges in Data Sharing and Governance

• Kim Ray and Cyril discuss the challenges of data sharing, particularly in Europe, where research data is meant to be shared but must comply with various regulations.
• Cyril explains the complexity of data governance in Europe, where laws trickle down from the EU to individual states and institutions.
• The need for a flexible system to accommodate different regulations and consent forms is emphasized.
• Cyril shares examples of how different datasets have different access requirements, such as signing agreements or waiting for approval.

Institutional and Legal Barriers

• Kelly Shen shares her experience with institutional barriers to data access, where her university was unwilling to sign off on agreements for all PIs.
• Cyril explains the difference between data user agreements (for specific datasets) and standard contractual clauses (general EU terms).
• The reluctance of some US institutions to accept EU terms is discussed, with Cyril noting that this is a common issue.
• The conversation touches on the need for better communication between researchers and lawyers to understand the specifics of data sharing and governance.

Potential Solutions and Future Steps

• Marietjie Botes suggests building relationships with legal offices to better understand and address their concerns.
• Cyril explains that as a service provider, he cannot negotiate standard contractual clauses but emphasizes the importance of providing information to lawyers.
• The discussion highlights the need for general principles to guide conversations between researchers and lawyers.
• Kim Ray and the team discuss potential future presentations and guest speakers, including representatives from ABCD, HBCD, and UK Biobank.

Collecting Data Governance Documents

• Kim Ray updates the team on the progress of collecting data governance documents, mentioning a spreadsheet with about 30 documents.
• The team discusses the need for more diverse representation, particularly from Latin America, Asia, Oceania, and Australia.
• Kelly Shen offers to reach out to colleagues in Australia for data governance documents and agreements.
• The team considers reaching out to other archives and databases for additional insights and documents.

Final Thoughts and Next Steps

• The team agrees to continue collecting data governance documents and exploring potential guest speakers for future meetings.
• The importance of understanding the specifics of data governance and the challenges of sharing data across different institutions is reiterated.
• The meeting concludes with plans to follow up on the discussed points and continue the conversation in future meetings.

Meeting: 2025-09-02

Attendees:  Kim Ray, JB Poline, Cyril Pernet, Jaime Delgado, Marietjie Botes, Kaitlyn Brethour, Simi Akintoye, Rae Price,

Meeting Recording: Passcode: 7Std9KN!

https://us02web.zoom.us/rec/share/I-KP316nuHWDpOCazzTmJa70UjgFxZ9kkFGZ5xQqDOcCHBB85Y1bNulT-WlHX_Uz.uPxy3VM8AZVGJz7G

Actions:

• Share scope document more broadly to get more offline feedback
• Prepare a few presentation options for future meetings

Meeting: 2025-09-02

Next meeting goal:  3 DG docs from Latin America, 3 DG doc from Asia, 3 DG from Oceania to make the dataset more representative globally.

        BrainLAT - a braindataset in LATAM

Next meeting Presentation Suggestions:

ezGOV, Public Neuro, SIESTA (Cyril will ask for 20 min presentation for Oct 7th).

Korean Brain Initiative - could we get a contact for this group?

Meeting: 2025-08-03

Meeting Recap:

• We have collected ~10 data governance documents (data use agreements, data management, and sharing policies) primarily from North America and Europe.
• Our goal is to reach at least 20 documents with greater geographic diversity.

Next Steps:

1. Continue collecting governance documents:

• Upload any relevant files to the Google Drive folder.
• Add meta-data descriptors to the Google Sheet.
• We are looking specifically for:

• Data use agreements
• Data management policies
• Data governance documents related to human neuroscience data
• If your organization or region lacks neuroscience-specific policies, please share the closest relevant equivalents (e.g., health data sharing or management plans).

• Goal: carry out an analysis of documents to prepare a manuscript outlining standards, gaps, needs, guidance, and a road map for moving forward.

2. Refining the scope of the group:

• This will be done asynchronously in Google Docs. Please watch for an upcoming draft for feedback.

Meeting: 2025-06-03

Attendees: Kim Ray, JB Poline, Tristan Glatard, Marietjie Botes, Fernanda Hansen, Blarie Porter, Simi Akintoye, Sebastian Urchs, Kyle Weber, Mary Majumder, Shavari Narendra, Rae Price, Kelly Shen, Cyril Pernet,

Regrets:

Meeting Recording:

https://us02web.zoom.us/rec/share/vEJb8XTMA9eEqAVWZUXkZzbVZ_EJi9__PWzLytYDdU3TLv5B7H20C8zmoWmd4eYW.zahIdAcukH0oXZmg?startTime=1748955599000 

Passcode: =BQM6?v%

Presenter Slides

Meeting Notes:

Scope:

Should we start in human neuroscience because of their somewhat established DG mechanisms, and the laws around data sharing and personal data protection.

Stakeholders should be examined and defined as well.

Data Protection:

Laws tend to cover human and personal data for research (are there differences in sharing information for discovery vs sharing of data for analysis), but there are also laws for non human data which tend to protect things like IP.

There may need to be additional laws around AI models and training.

CAMH (https://www.camh.ca/?) has a model to share their data for research, but are engaging in discussion of sharing data for commercial purposes which leads to a very different set of expectations.

Potential projects:

GD docs vs Consent

        Decision: Lets gather DG docs, put them in a repository, tag them.  

Extra notes from June 3rd meeting: https://docs.google.com/document/d/1Vze4cWMuepwmP-B8C7gssV3-N-rySHlEHV-uAq2Z8eI/edit?tab=t.0 

Data Governance TT - June 3rd Meeting

Participants: Kim Ray, Fernanda Hansen, JB Poline, Tristan Glatard, Marietjie Botes, Blaire Porter, Sebastian Urchs, Rae Price, Kyle Weber, Kelly Shen, Simi Akintoye, Cyril Pernet, Mary Majumder, Sharvari Narendra, Damian, Jessica Seegobin

Welcome & Introductions:

• Kim Ray gave a brief overview of the Neuro community - a partnership with BRDIGE, INCF and GA4GH.
• JB expanded on the other two theme teams, noting the contributions of Francis Jeanson and Randy McIntosh
• The group conducted a round of introductions:

• Kim Ray -  lead on BRIDGE, based at UT-Austin with background in functional MRI methods, functional connectivity, multimodal approaches and expanding to big data
• JB Poline - based at McGill, involved in INCF
• Tristan Glatard - Scientific Director of the Krembil Center for Neuroinformatics at CAMH, also involved in INCF in the past
• Marietjie Botes - part of BRIDGE at UT-Austin, helping with the the legal research on brain data management
• Fernanda Hansen - working with the Pathfinder study cases to share data from/to Brazil
• Blair Porter - postdoc on BRDIGE, also went to grad school at UT-Austin studying functional connectivity
• Sebastian Urchs - research software developer, based in Europe but works with JB at McGill; developed the neurobagle project with interest in learning about how we can build software that implements these governance principles
• Rae Price - Informatics Manager at the Ontario Brain Institute, working on the Brain Code Neuroinformatics Platform
• Kyle Weber - data quality analyst at the Ontario Brain Institute, helping promote best practice standards within groups to improve data quality
• Kelly Shen - Director of Operations at Simon Fraser University's Institute for Neuroscience and neurotechnology, leading the development of a neuroinformatics platform; also involved in INCF
• Mary Majumder - based at the Center for Medical Ethics and Health Policy at Baylor College of Medicine; working on a research team funded to explore addressing barriers to data sharing in the context of the US Brain Initiative Project
• Sharvari Narendra  - bioinformatics scientist at the University of Virginia
• Cyril Pernet - working on brain imaging, neuroinformatics, data sharing

 Long-term goals:

• Kim: This is a multidisciplinary group of researchers, data stewards, and policy advocates with interest  in data governance
• Aim to assess the current landscape of neuroscience data governance
• Different nations follow varied rules and guidelines for data governance, warranting the need to assess what this looks like including gaps in data governance, inconsistencies across regions/institutions throughout the data life cycle. This stems from the fact that neuroscience lacks defined data governance frameworks, particularly when trying to move or share data

Scope:

• Cyril (in chat): “neuroscience -- we need to define the space that encompasses ; what is in or out of scope? cells, small animals, primates, human”
• Cyril - policies are different across the board, so we need to define what is in and out of scope.
• Kim - cautious in how strongly we define this, while recognizing our current expertise may be the place where we want to start and then expand the scope as we get momentum. Many folks have expertise in neuro imaging, but this is a small field of neuroscience data.
• JB: a lot of what’s being done can be generalized (e.g. broad categories).
• JB: Open Brain Consent project - people would upload the informed consent forms —suggested doing the same for data governance documents with broad categories, where everyone could push their own data governance frameworks with certain tags (e.g. imaging, animal studies) with a search capacity
• Tristan (chat): “let's also make sure to review and start from existing data governance / sharing frameworks.”
• Marietjie: a legal perspective warrants starting from existing data governance frameworks; data protection laws across the globe focus on personal or human data. More effort needed to probe  where the gaps are and how we fix it. We need to define ‘neuroscience data’ and what it encompasses.
• Kelly: figure out who the global stakeholders are, and consider whether it needs to be extended beyond  researchers or data stewards, as well as who owns data.
• Kim: data ownership varies across regions, cultures
• Cyril (chat): “Is it the case that sharing non human data has no legal requirements?”

• Marietjie: data protection laws provide for the sharing of plan, standard not personal data, which may fall under this context. However, IP is copied under different laws. Recommended exploring the complementary laws that play into data sharing, including IP.
• Tristan: there are reasonable privacy considerations involved with retrieving the original data.

• Sebastian (chat): “can we distinguish between sharing of information for discovery, and sharing of data for analysis?”

• Marietjie: important to establish the purpose for which you use data, which will help determine what laws and requirements are relevant in terms of data protection

• Kim: do we have the knowledge or desire to expand to the additional areas, types of data (e..g potential data commercialization)?

• Cyril: some research data can be partly clinical; advocated limiting scope to research data, but how it’s used can be applied to different use cases across varied countries, labs.
• Tristan: at CAMH, there’s a framework for sharing data for secondary use in research, requiring folks to come with approval form their REB. There’s also conversations around accessing data for commercial purposes. AI for research or commercial applications with AI can both be relevant.

• Kim: maybe we should focus in the research fields; if findings expand into commercialization, it can then be considered

Potential projects:

• Kim: two different topics: the first includes the Open Brain Consent, and how we can build and modify informed consents for neuroscience cases; the second involves reviewing data governance documents to examine gaps, where they may be harmonization
• JP: populate a repository of assembling existing data governance documents
• Group shared consensus for the latter idea
• Tristan: International Brain Initiative from EBI can be a good place to start from. (Paper shared in chat - https://www.cell.com/neuron/fulltext/S0896-6273(21)00955-7)  
• Cyril: offered to pull folks from EBRAINS and will circle back
• Kim: will create a Google Drive Folder for the group to deposit documents into;  goal of assembling 1-2 documents by July 2025  per person (15 documents combined)

Meeting frequency, goals for making progress on this project:

• Kim: suggest a monthly recurring meeting

 Next steps/actions:

• Kim -  create a Google Drive Folder for the group to deposit documents into; goal of assembling 1-2 documents by July 2025  per person (15 documents combined)
• Jessica - send out a reminder for the upcoming meeting (July 1st)