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. (shrink)

Purpose Digital contact tracing technologies are critical to the fight against COVID-19 in many countries including the UK. However, a number of ethical, legal and socio-economic concerns that can affect uptake of the app have been raised. The purpose of this research is to explore the perceptions of the UK digital contact tracing app in the Black, Asian and Minority Ethnic community in Leicester and how this can affect its deployment and implementation. Design/methodology/approach Data was collected through virtual focus groups (...) in Leicester, UK. A total of 28 participants were recruited for the study. All participants are members of the BAME community, and data was thematically analysed with NVivo 11. Findings A majority of the participants were unwilling to download and use the app owing to legal and ethical concerns. A minority were willing to use the app based on the need to protect public health. There was a general understanding that lack of uptake will negatively affect the fight against COVID-19 in BAME communities and an acknowledgement of the need for the government to rebuild trust through transparency and development of regulatory safeguards to enhance privacy and prevent misuse. Originality/value To the best of the authors’ knowledge, the research makes original contributions being the first robust study conducted to explore perceptions of marginalised communities, particularly BAME which may be adversely impacted by the deployment of the app. By exploring community-based perceptions, this study further contributes to the emerging citizens’ perceptions on digital contact tracing which is crucial to the effectiveness and the development of an efficient, community-specific response to public attitudes towards the app. The findings can also help the development of responsible innovation approaches that balances the competing interests of digital health interventions with the needs and expectations of the BAME community in the UK. (shrink)

Purpose– The purpose of this paper is to attempt to investigate how Information and Communications Technology researchers in UK computing departments address ethics in their research. Whilst research and innovation in ICT has blossomed in the last two decades, the ethical, social and legal challenges they present have also increased. However, the increasing attention the technical development receives has not been replicated in the area of developing effective guidelines that can address the moral issues inherent in ICT research.Design/methodology/approach– This research (...) is qualitative and made use of interviews. The data analysis was done with dialectical hermeneutics. Through a dialectical hermeneutic process, this research unpacks different understandings of relevance attached to ethics reviews of ICT research in UK computing departments.Findings– The findings include that ethics reviews are relevant because; it is a moral duty, it improves trust for researchers, it is part of risk assessment, it is in compliance with the law and it is a sustainable act.Practical implications– These various understandings illustrate an important dialectic process on the current state of the art in ICT research.Social implications– It asks to what degree the currently dominant model of ethics review based on biomedical ethics is optimal to ICT.Originality/value– It proposes a framework that can effectively help researchers and administrators to ensure responsible research and innovation in ICT. Finally, it identifies that ICT researchers would benefit from the developing repertoire of responsible research innovation. (shrink)