Developing an international governance framework to advance global brain and mental health data equity and innovation

Global mental health research requires sharing biological and behavioural measures across international cohorts to accelerate equitable development of treatments for all peoples.

While brain and mental health research strives to become international, the lack of transparency and navigability of existing legal, ethical, and sociocultural guidance imposes barriers to data sharing.

Building on the momentum of the International Brain Initiative, we propose a bottom-up approach to address these challenges by developing foundations for an International Data Governance Framework (IDGF).

The long-term goal of this program is to form a sustainable global consortium to develop, operate and disseminate a robust brain and mental health IDGF similar to what has been accomplished in genetic research via GA4GH. A series of white papers and annual workshops will jump-start the process. International data exchange workflows will be implemented and tested on study-case, validation datasets.

A diverse group of stakeholders consisting of scientific, institutional and governmental representatives, legal experts, funders, industry representatives as well as Persons With Lived Experience (PWLE; through gmhpn.org) will be engaged.

Completion of these activities will produce invaluable tools and infrastructure for researchers, PWLE, and policy-makers for navigating international data sharing and lay a solid foundation for a continuing global consortium.