Connecting Neuroscience

Building a framework for international data governance

As neuroscience continues to produce multifunctional, multidimensional, and multijurisdictional big data, how that data is shared, accessed, and safeguarded globally becomes a high priority, and responsible data governance a necessity. Yet, existing data governance mechanisms remain constrained within geopolitical boundaries and appropriate use is difficult for researchers to navigate.

These challenges are described in a review published in Neuron by The Kavli Foundation’s Director of Life Sciences, Amy Bernard, and Science Program Specialist, Aggie McMahon, along with Associate Professor Franco Pestilli at The University of Texas at Austin and others representing international perspectives. They outline how an international data governance framework and accompanying infrastructure can assist investigators, institutions, data repositories and funders with traversing disparate policies.

“To ensure ethically responsible, legally compliant, socially acceptable, and open neuroscience research and innovation, there is a need to develop an international data governance framework that can harmonize the currently fragmented data governance ecosystem,” stated lead author and Research Fellow with the European Human Brain Project, Dr. Damian Eke.

Such an International Data Governance Framework will need to conform to national laws and regulations, while respecting culturally sensitive ethical concerns – and will require time, resources, and the involvement of diverse stakeholders. To accelerate the process, The Kavli Foundation provided seed funding to Professor Pestilli and colleagues to support the development of such a framework for neuroscience data sharing.

In this project, the team will develop case studies in data management and analysis spanning three countries: the United States., Australia and France. Specifically, hands-on technological solutions that will connect a US-based cloud platform, brainlife.io, with research data sources in Australia and France, will be developed for scientists to test how they track and share research data across borders. Data management processes will comply with laws and regulations within and between each country and serve as a data governance framework prototype.

The hope is that this project will contribute to not only the development of a more robust infrastructure of policies and software but will connect people as well. Making it easier to share data means it’s also easier for researchers to collaborate.

“Research efforts to crack the neural code are unlikely to be limited to labs located in just one country,” says Pestilli. “Researchers from multiple disciplines and from around the world are collaborating to share ideas, results, and analysis tools. This means that the research data must also cross international jurisdictions. The new global neuroscience research model has deep implications for how we have been thinking about data sharing, ethics, and governance. The gift by The Kavli Foundation reflects visionary support that will help us tackle the important but unexplored issue of international data governance.”

Neuroscience

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