Creating a Global ‘BRIDGE’ for Brain Research Data

APS Fellow Franco Pestilli describes scientific data as the “new oil”—a vital resource to be ethically safeguarded and shared across international borders.  

The University of Texas at Austin professor, who studies brain networks and leads the development of a major U.S.-based data platform for neuroscience data, believes a global data infrastructure is critical to advancing psychological science.  

“Well-managed and governed data are fundamental to assuring that the scientific processes of research and discovery are trustworthy,” Pestilli said. “Because of this, data must be collected, preserved, and shared in a responsible manner.” 

Indeed, sharing data involves navigating a labyrinth of laws and ethical standards, particularly those that pertain to privacy for human subjects. And Pestilli is among a group of scientists developing international governance processes for brain and health research data. He is a principal investigator with the Brain Research International Data Governance & Exchange (BRIDGE) project, which aims to create a responsible and sustainable governance system for data sharing.  

Collaborations are thriving, but regulations are not 

Data governance is the set of processes that determine how data is managed. Today, most guidelines and best practices for data governance “think local, not global.” Pestilli said.  

​​“Laws and regulations about data focus on national and regional needs; no international data coordination has been fully implemented,” he said. “This is at odds with the ever-growing globalization of scientific research – collaborations are crossing national borders more and more, but data regulations are not.” ​​​ 

“I think we are at a moment where we’re moving from excellent data sets collected in individual labs to a model where data sets will be collected and shared across not just labs, and not just institutions, but countries and nations,” Pestilli said.  

The  BRIDGE project aims to create a responsible and sustainable governance system for data sharing.  

Funded by the Wellcome Trust, the BRIDGE project’s long-term goal is to form a global consortium that will develop, operate, update, and disseminate a robust brain and mental health international data governance framework (IDGF). BRIDGE is particularly committed to including scientists from low- and middle-income countries, said Kimberly Ray, BRIDGE project director. 

“Todays’ neuroscience research must be more FAIR [Findable, Accessible, Interoperable, and Reusable] and inclusive,” Ray said. “Including data and scientists from around the world, particularly from lower-income countries, will help us to do this and will improve the reproducibility and generalizability of our research. But first we need to better understand the data governance landscape across these different countries to access and share data,” Ray said.  

Bringing in a variety of experts 

BRIDGE is assembling a global coalition of experts in law, ethics, technology, and science to share knowledge and insights, with the aim of facilitating breakthroughs in brain health research. The group’s ambassadors program brings in law, technology, ethics, and lived-experience experts from Kenya, Nigeria, and South Africa to foster exchange of knowledge and expertise. The ambassador program will expand to include experts from Africa, South America, Europe, and North America. A key aspect of the ambassador program is the inclusion of individuals with lived experience of mental health conditions, whose insights will allow the data governance frameworks to transcend established perspectives and add valuable cultural competencies to the discussion. 

The program held a regional workshop in December 2023 in Lagos, where participants began identifying current challenges and best practices for international data governance. A similar workshop is scheduled for June 29–30 in Rio de Janeiro, to be followed by a global workshop September 22–23 at UT–Austin that will bring together experts from around the world to discuss current challenges and solutions for developing an international brain-data governance framework. 

BRIDGE also aims to build a platform that scientists can use to identify the laws and regulations they must meet to share their data. Centralizing these regulations will take the burden off of individual researchers, who can instead devote more time to scientific output.  

“Say, for example, I’m wanting to share my data with a collaborator in the EU [European Union],” Ray said. “Our goal is to build a toolkit that will identify what I need to do to the data,  lay out all of the laws and ethical expectations I need to follow, and then provide a mechanism to facilitate the act of sharing the data.” 

Pestilli, a 2016 recipient of the APS Janet Taylor Spence Award, has been a pioneer in ​open science and ​data technology. He founded and directs brainlife.io, a free cloud-computing platform with a variety of computing resources that enable users to analyze and reuse complex neuroscience data, including neuroimaging data. The platform has drawn approximately 3,000 users from more than 400 institutions across the globe.   

BRIDGE is another step in advancing open science and reproducibility, while upholding the myriad data-protection and privacy laws around the world, Pestilli said. In essence, it models scientific data’s role as a critical international resource, he said.  

“Psychological science is becoming global,” Pestilli said. “We need to develop the research toolkit to enable that in a way that doesn’t put anyone at risk and respects the diversity and complexity of human beings.” 

For more information about BRIDGE, visit bridge.incf.org 

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