Global FAIR Brain Data; collaborations across high-, medium- and low-income countries.

Franco Pestilli, PhD Presenter
University of Texas, Austin
Austin, TX 
United States
 
Monday, Jun 24: 3:15 PM - 4:30 PM
Symposium 
COEX 
Room: Hall D 2 
Neuroimaging research is a high-income country field. Challenges due to lack of training, infrastructure, and sociocultural barriers have limited data collection, analysis, and sharing in low- and medium-income countries. As of today, the FAIR principles for data stewardship have had a profound influence on research (Wilkinson et al., 2016), but are effectively a privileged concept for high-income countries. Undoubtedly, the global representation of the world population, heterogeneity, and diversity is still limited in the shared neuroimaging datasets. Brain datasets from low- and middle-income countries such as those in the African continent are still missing from the global research ecosystem. Global brain research outputs and neurotechnologies are largely informed only by datasets collected from populations in the global north. The scientific and translational implication of the lack of datasets in the global south can affect the development of therapies, limit innovation, and the generalization of findings to global world populations.

We will describe the Nigerian Brain Dataset: the first neuroimaging dataset publicly shared from Nigeria. We will describe some of the characteristics of this clinical-quality, low-income country dataset, as well as the barriers to collecting, organizing, and sharing the dataset. We will propose possible ways of mitigating the challenges in an attempt to contribute to advancing FAIR brain data in Africa. We will discuss the mitigation proposal in the context of the recently started Brain Research International Data Governance Exchange project (bridge.incf.org). Funded by the Wellcome Trust, BRIDGE aims to study the legal, ethical, and technical infrastructure challenges and develop facilitatory tools for data governance that can help data sharing across low-, medium- and high-income countries. The project also pursues establishing training, education, and research collaborations between African, Latin American, European, and North American countries.