The ethical and legal landscape of brain data governance

Abstract

Neuroscience research is producing big brain data which informs both advancements in neuroscience research and drives the development of advanced datasets to provide advanced medical solutions. These brain data are produced under different jurisdictions in different formats and are governed under different regulations. The governance of data has become essential and critical resulting in the development of various governance structures to ensure that the quality, availability, findability, accessibility, usability, and utility of data is maintained. Furthermore, data governance is influenced by various ethical and legal principles. However, it is still not clear what ethical and legal principles should be used as a standard or baseline when managing brain data due to varying practices and evolving concepts. Therefore, this study asks what ethical and legal principles shape the current brain data governance landscape? A systematic scoping review and thematic analysis of articles focused on biomedical, neuro and brain data governance was carried out to identify the ethical and legal principles which shape the current brain data governance landscape. The results revealed that there is currently a large variation of how the principles are presented and discussions around the terms are very multidimensional. Some of the principles are still at their infancy and are barely visible. A range of principles emerged during the thematic analysis providing a potential list of principles which can provide a more comprehensive framework for brain data governance and a conceptual expansion of neuroethics.

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

“…This is also a concern pointed in previous studies where it was highlighted that scientists, lawmakers, and scholars in the humanities and the social sciences are largely shaping the debate over neurorights [47]. This also aligns with our previous research which shows that neurorights might not be fully discussed in the context of international brain data governance and has low visibility in the international brain data governance landscape [5].…”

“…The application of consent continues to raise issues and concerns which is in line with previous research which shows that consent is one of the most discussed principles with different consent models existing in the brain data governance landscape [5]. It appears that the different consent models which exist might not be adequate in addressing the potential downstream uses of data as neuroscientist are left with no option to attempt to clarify to a certain level the potential downstream uses of data with the hope of curtailing misuse and exploitation.…”

“…Prior to this study a scoping review was carried out to identify the key ethical and legal principles in the landscape of brain data governance [5] which was followed by a pilot study. The pilot study was used to test the feasibility of this study and provided results which assisted in making minor adjustments to the interview questions.…”

“…Secondly, it also creates gaps in the understanding of the issues that arise during the application of these principles in a global context which also directly affects data governance. Data governance provides a framework for the e cient management of data [3] and is in uenced by various ethical and legal principles [4,5]. Some of the principles underline the importance of moral rules and obligations and the importance of identifying general considerations [6] when managing data from collection to deletion.…”

Ethical positions that underpin global brain data governance discourse.

“…These challenges span across technical, regulatory, and ethical boundaries which influence the collection, processing, sharing and storage of brain data. Although there is a current acknowledgment of the importance of ethical considerations in the governance of brain data, various ethical and legal principles which influence brain data governance currently exist as identified in our previous study (Ochang et al, 2022). These principles such as privacy and consent are very visible in discussions (but multidimensional) while other principles and concepts such as neurorights and data retention and destruction are still less visible which shows that more work has to be done on their global conceptualisation and visibility.…”