Ethical Underpinnings of Global Brain Data Governance

Advances in neuroscience and other disciplines are producing large-scale brain data that consists of datasets from multiple organisms, multiple disciplines, multiple jurisdictions with varying degrees of sensitivity and data formats. These datasets are not only applied in neuroscience research but also in innovations that largely involve new generation of neurotechnologies and medical interventions. However, whereas brain data continues to go beyond boundaries (in relation to increased international collaboration) the governance framework (including ethical principles and regulatory provisions) that shape their collection, processing, application, sharing, and use continue to be constrained within specific jurisdictions. Such international, interdisciplinary, and intercultural brain data raises several ethical and legal challenges relating to data protection, informed consent, and intellectual property especially in the absence of a global framework for the governance of brain data. Broader ethical and societal questions such as the appropriateness of data use outside their original purpose, the possibility of data abuse or misuse, are also paramount. Maximising these benefits requires governance principles and frameworks that will encourage trustworthy sharing and use of brain data. In the absence of a global governance framework for brain data, understanding the ethical and legal principles that influence brain data governance is paramount. There has been little research in the field of brain data governance and current works in the field have called for a contextual and culturally informed study of brain data governance which will aid in the development of a global governance framework that is contextually informed. This research answers such calls and draws attention to the understanding of global brain data governance. The research seeks to understand the ethical and legal principles that influence global brain data governance. The research investigates the ethical and legal principles that shape the current landscape of brain data governance through a systematic scoping review and several key insights are identified. Through the use of interviews and a thematic analysis the research provides contextual perceptions of key stakeholders (neuroscientists) involved in brain projects globally drafted from the International Brain Initiative (IBI), the Latin American Brain Initiative (LATBrain), The Society of Neuroscientists of Africa (SONA) and an understanding is provided on how ethical and legal principles influence data governance in neuroscience in different context. Key issues and concerns arising from the application of the identified principles and their domains are identified around human and animal brain research. Through the use of a secondary analysis of the qualitative data gotten from the interviews and ethical theories, ethical positions of key stakeholders (neuroscientists) are also understood which gives a theoretical underpinning to the research. These understandings are novel as this research is the first to provide an understanding of global brain data governance through the perceptions of neuroscientists involved in brain projects globally. The insights from the research also link to other published works by the researcher in the field of data governance and brain data. The overall research provides an understanding of global brain data governance and can lead to the development of a global framework for data governance that is contextually informed by the perceptions of key stakeholders.

Name dc:type.qualificationname

PhD

Level dc:type.qualificationlevel

Doctoral

Grantor dc:publisher.institution

De Montfort University

Year dc:date.issued

2024

Author dc:creator

• Ochang, Paschal

Licence

• https://dora.dmu.ac.uk/bitstreams/677bc524-69ad-4938-8bf8-7a61826312e9/download