The Latin American (LATAM) BRIDGE Workshop took place on June 29, as a parallel event to the Brain 2024 – Brain, Behavior, and Emotions Congress and continued on June 30 at the D’Or Institute for Research and Education (IDOR) Rio de Janeiro. The Brain Research International Data Governance & Exchange (BRIDGE) project aims to establish an international data governance framework to promote data sharing in neuroscience and mental health across four continents. The project is supported by the Wellcome Trust, a global philanthropic foundation. 

The 2024 LATAM BRIDGE  workshop benefited from having also Brain Congress attendees, and the participation of IDOR researchers and scientific assessors.  

All these participants highlighted various technical challenges, such as data management and storage, and addressed regional technological gaps. These points are essential to the initiative’s success, which depends on the integration and sharing of data between different regions.

From a legal perspective, topics such as the impact of new AI legislation, the interaction between international and regional laws, and specific regulations for protected populations, including children and indigenous communities, were discussed. Bill 522/22, which amends the Brazilian General Data Protection Law, was also addressed, as it introduces the concept of “neural data” and its regulation, which would have a significant impact on future research. 

On the ethical front, the workshop emphasized the complexities of working with Research Ethics Committees, especially in multicenter studies. Participants also discussed the handling of data from vulnerable populations and the regulations regarding public data-sharing requirements imposed by scientific journals and funders. 

Another central issue was the engagement with PWLE (People With Lived Experience), with discussions on effective communication with these groups and the role of patient associations in different regions. The importance of mapping these challenges, understanding regional variations, and developing new research tailored to these groups was underscored. 

The workshop also pointed out other potential studies, such as those related to data sharing on Zika, COVID-19, Alzheimer’s, and fetal studies. Issues like guardianship and the ‘right to be forgotten’ were discussed, especially concerning the future management of brain data and ethical considerations regarding children’s data as they reach adulthood. 

In conclusion, the BRIDGE Workshop successfully laid the groundwork for future collaborations and identified critical areas for improvement, particularly in communication, data management, and ethical considerations. The proposed next steps will be crucial for advancing the project and addressing the various challenges identified during the discussions.