IBI working group publishes paper calling for international data governance

Large collaborations are becoming increasingly common in neuroscience research. Neuroscientists increasingly often have to navigate a complex landscape of different ethical principles, national and international laws, regulations, and policies before they can share their data with collaborators and colleagues. Data sharing has proven to be a far from trivial task, and the need for better data governance has been one of the driving forces behind the formation of the International Brain Initiative (IBI).

INCF has been an active member of the IBI for several years, and Maryann Martone, chair of the INCF Governing Board, is also the co-chair of the IBI Data Standards and Sharing Working Group. In December 2021 the working group’s task force on International Data Governance published a paper describing issues and possible solutions for brain data governance. The aim of the paper is to raise awareness of the need for clearer data governance frameworks for the neuroscience community and its stakeholders, including researchers, institutions, professional societies, publishers, funders, and policy makers. The paper also proposes recommendations on how data governance on the international level can be established and managed.

The recommendations focus on enabling ethical sharing and openness, stating that data governance should be compatible with the open-sharing needs of the neuroscience research community while respecting the diversity of ethics, cultures, and privacy around data sharing across nations. The goal should be to maximize sharing and impact generated from data while minimizing the risk that researchers and institutions assume when sharing data, by clarifying international policies and helping implement governance plans that facilitate research and respect the individuals - both investigators and study participants.

The authors also make suggestions for practical actions:

• Creating a global alliance (a consortium) to guide the development of technical standards and establish data governance best practices, organized at a grass-roots level, led by scientists, and endorsed by neuroscience organizations. 

• Developing a sustainable federated data catalog of neuroscience data from brain initiatives and other resources around the world, establishing governance to maintain metadata standards for FAIR data sharing, and developing and disseminating tutorials, training materials, and educational activities for dataset publishing and data reuse.
• Developing toolkits: 
  • a technical toolkit to guide researchers in international data governance 
  • a regulatory and ethical toolkit, to help researchers navigate issues related to international data governance. 

Read the paper: https://www.cell.com/neuron/fulltext/S0896-6273(21)00955-7

Read more about IBI: https://doi.org/10.1016/j.neuron.2020.01.002

The International Brain Initiative is a consortium aiming to coordinate between the large international brain initiatives with the purpose of maximizing reproducibility and minimizing duplication of effort. The current members of the consortium include the U.S. BRAIN Initiative, the E.U. Human Brain Project, the Korea Brain Project, the Japan Brain/MINDS Project, Israel Brain Technologies, and the Australian Brain Alliance. The Consortium is coordinated by the Kavli Foundation, assisted by INCF, IBRO, and the Australian Brain Alliance.