Brain research generates and applies big, multidimensional and multifunctional data with different levels of sensitivity. The usability, quality, integrity, availability and security of these data are critical to excellent neuroscience research and innovation. To ensure these essential qualities, as well as adherence to the FAIR data principles, EBRAINS has established a comprehensive framework and structure for responsible data governance, which revolves around individuals, processes and technology.
The Human Brain Project has worked to provide researchers who are using the EBRAINS research infrastructure with the skills needed to identify and address ethical, legal, and societal issues that arise from brain research. Helping to shape the direction of neuroscience in ways that serve the public interest. To fulfil this goal, we have developed training that delves into the nature of this framework and explores its practical implementations within EBRAINS data processing workflows.
EBRAINS provides access to a wide array of neuroscience data from various sources, formats and modalities, including human and non-human animal subjects, with a strong emphasis on ensuring high-quality data collection that is both responsible and ethical. In a series of presentations, Damian Eke (Research Fellow at De Montfort University and the Data Governance Coordinator for the HBP and EBRAINS), Simisola Akintoye (Lecturer in Law at De Montfort University and the HBP Data Protection Officer), and William Knight (Senior Research Fellow at De Montfort University and Ethics Compliance Manager for the HBP and EBRAINS) provide guidance to EBRAINS data providers and users on what is expected of the human and animal data that is shared through EBRAINS services.
The first part of the training focuses on the Data Governance structure we have developed for EBRAINS. The video is an introduction to responsible Data Governance and discusses the framework of people, processes and technologies needed for data governance. It explores the different strategies employed to oversee data protection, including the implementation of data protection impact assessments and the responsibilities of the data protection officer. You will learn how to address these issues in ways that are socially acceptable, ethically responsible and legally compliant from Damian Eke, Simisola Akintoye and William Knight.
The second part of the training address the specific criteria for handling and sharing animal datasets on EBRAINS service. Mice, rats, non-human primates – these research subjects are living creatures and any data collected from them should be done responsibly, ethically and in compliance with the law. William Knight presents and discusses the requirements around the ethical use of animal data in research. This presentation outlines the ethical expectations for sharing animal research data through EBRAINS service and highlights the measures taken by EBRAINS to address this issue. In addition to William Knight’s introduction to the topic, we recommend that data providers consult the EBRAINS data provision protocol, which you can find among the terms listed on the EBRAINS website.
This training is a part of a series of training modules explaining and reflecting on the Human and animal data in EBRAINS and how this approach can enable better science and innovation. The training covers human and animal data, gender, diversity and inclusion, researcher awareness and research integrity, dual use of concern and misuse ethics and RRI dimensions of knowledge transfer and commercialization, neuroethics, consciousness & AI ethics, and science communication. A module on public engagement and foresight is under development and will be available soon.
Want to know more about Responsible Research and Innovation in the Human Brain Project, more information can be found on the Ethics and Society webpage.