Perceptions on the Ethical and Legal Principles that Influence Global Brain Data Governance

Neuroethics 17 (2):1-25 (2024)
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Abstract

Advances in neuroscience and other disciplines are producing large-scale brain data consisting of datasets from multiple organisms, disciplines, and 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. In addition, despite the demand for a brain data governance framework that accounts for culture, there is a gap in empirical research and actions to understand how key stakeholders around the world view these issues using neuroscientists who are affected by these ethical and legal principles. 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 contextual issues and concerns that arise in brain data research around these principles. These issues and concerns circulate around intimately connected areas which include ethics, human rights, regulations, policies and guidelines, and participatory governance. Also, key contextual insights around animal research and ethics were identified. The research identifies key principles, issues, and concerns that need to be addressed in advancing the development of a framework for global brain data governance. By presenting contextual insights from neuroscientists across regions, the study contributes to informing discussions and shaping policies aimed at promoting responsible and ethical practices in brain data research. 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.

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Bernd Stahl
Westfälische Wilhelms Universität, Münster

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