Global Harmonization of Neurodata Sharing, Standards and Governance

Damian Eke

On 12-13 January 2020, representatives from the major brain initiatives came together for the International Brain Initiative’s (IBI) Data Standards and Sharing Roundtable, in Tokyo, Japan. This was an initial opportunity to understand the best approaches of harmonizing brain data standards, governance and sharing and was organized by IBI Data Standards and Sharing Working group, the Kavli foundation, Japan Agency for Medical Research and Development, Japan Brain Minds and Brain/MINDS Beyond

The goals of the Roundtable were to: 

  • Identify data management and governance best practices of the different brain initiatives,
  • Understand common interests, shared needs and areas of potential cooperation and
  • Develop short, mid and long term action plans for the IBI Standards and Sharing working group.

Represented in this Roundtable were Japan Brain/Minds project, the EU Human Brain Project, China Brain Initiative, US Brain initiative, Canadian Brain Research Strategy, Australian Brain Alliance and Korean Brain Initiative. Further participants came from initiatives and organizations such as the International Neuroinformatics Coordinating Facility (INCF), Allen Institute for Brain Science, the Global Alliance for Genomics and Health (GA4GH), International Brain Laboratory, Cohen Veteran’s Bioscience, NeuroML-DB, Neurodata Without Borders (NWB), the Human Cell Atlas Data Coordination Platform, NTT DATA Corporation, BrainHealth Databank, Canadian Open Neuroscience Platform, and Brainlife.io. The EU Human Brain project were represented by Professor Jan Bjaalie (HBP Infrastructure Operations Director) and Dr. Damian Eke (HBP Data Governance Working Group). 

The meeting started off with presentations from major brain initiatives which were followed by four panel discussions focused on: 

1.     Learning from data sharing practices in other fields (e.g genomics),

2.     Challenges and opportunities in neurobiology data sharing,

3.     Challenges and opportunities in human brain data sharing and 

4.     Enabling web-scale neuroscience data interoperability.  

These panel discussions demonstrated that there are common challenges and opportunities facing the different Brain initiatives. It also revealed that there is a shared desire to address these challenges while harnessing identified opportunities. Some of these include the challenge of harmonization of neurodata standards and interoperability of multimodal and multidimensional data types, lack of motivations to share data, regulatory differences and the difficulty of ensuring the privacy and confidentiality of research participants when sharing neuroimages. Owing to increased advances in technology and the continued collaborative efforts of major brain initiatives, identified opportunities include possibilities of collaborating on common neurodata schemas for international brain data sharing, education and infrastructural support to sharing and finding data. 

IBI Data Standards and Sharing Working Group

It was agreed that the IBI Data Standards and Sharing Working Group can provide guidance to the international neuroscience community on ethical and privacy standard creation, incentives for data sharing, training and standards for neurodata governance and management. There was indeed an appreciation/understanding that data sharing is a shared responsibility and that  the IBI Data Standards and Sharing Working Group can provide effective mechanisms of achieving responsible international sharing of brain data. 

A brainstorming session to conclude the Roundtable generated unique and diverse insights that shaped emerging action plans for the IBI Data Standards and Sharing Working Group, including a potential white paper. These action plans align with the IBI mission to create resources or programs that augment national or regional brain initiatives. Three selected actions from a long list of generated ideas will be discussed further in the upcoming meeting of the Working group in the first quarter of 2020. 

The IBI Data Standards and Sharing Working Group is a highly prioritized working group in the IBI and membership is expected to comprise of representatives from each of the participating brain initiatives, from organizations in the IBI Stakeholders and Funders Collectives, and from the scientific community. Other matters such as leadership and goal-setting of the Working Group will be finalized before the upcoming meeting, the date and venue of which will be announced soon. 

Dr. Damian Eke is part of the HBP Ethics Support team and a member of the HBP Data Governance Working Group.

The post Global Harmonization of Neurodata Sharing, Standards and Governance appeared first on Ethics Dialogues.


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