Towards an understanding of global brain data governance: perceptions on the ethical and legal principles that influence brain data governance

Abstract

Abstract Advances in neuroscience and other disciplines are producing large-scale brain data that consists of datasets from multiple organisms, disciplines, jurisdictions in different formats. However, due to the lack of an international data governance framework brain data is currently being produced under various contextual ethical and legal principles which may influence key stakeholders involved in the generation, collection, processing and sharing of brain data thereby raising ethical and legal challenges. Also, although calls for a culturally informed brain data governance framework have been made, practical steps and studies to understand the global perceptions of key stakeholders using neuroscientists who are influenced by these ethical legal principles is currently lacking. Therefore, using the research question how do ethical and legal principles influence data governance in neuroscience? we attempt to understand the perceptions of key actors on the principles, issues and concerns that can arise from brain data research. We carried out interviews with 21 leading international neuroscientists. The analytical insights revealed key ethical and legal principles, areas of convergence, visibility, and the issues and concerns that arise in brain data research around these principles. These issues and concerns mainly circulate around intimately connected areas which include ethics, human rights, regulations, policies and guidelines, and participatory governance. The research answers the call for a cross cultural study of global brain data governance and the results of the study will assist in understanding the issues and concerns that arise in brain data governance.