Responsible Data Governance of Neuroscience Big Data

Open access article.Current discussions of the ethical aspects of big data are shaped by concerns regarding the social consequences of both the widespread adoption of machine learning and the ways in which biases in data can be replicated and perpetuated. We instead focus here on the ethical issues arising from the use of big data in international neuroscience collaborations. Neuroscience innovation relies upon neuroinformatics, large-scale data collection and analysis enabled by novel and emergent technologies. Each step of this work involves aspects of ethics, ranging from concerns for adherence to informed consent or animal protection principles and issues of data re-use at the stage of data collection, to data protection and privacy during data processing and analysis, and issues of attribution and intellectual property at the data-sharing and publication stages. Significant dilemmas and challenges with far-reaching implications are also inherent, including reconciling the ethical imperative for openness and validation with data protection compliance and considering future innovation trajectories or the potential for misuse of research results. Furthermore, these issues are subject to local interpretations within different ethical cultures applying diverse legal systems emphasising different aspects. Neuroscience big data require a concerted approach to research across boundaries, wherein ethical aspects are integrated within a transparent, dialogical data governance process. We address this by developing the concept of “responsible data governance,” applying the principles of Responsible Research and Innovation (RRI) to the challenges presented by the governance of neuroscience big data in the Human Brain Project (HBP)

Responsible Data Governance of Neuroscience Big Data

Current discussions of the ethical aspects of big data are shaped by concerns regarding the social consequences of both the widespread adoption of machine learning and the ways in which biases in data can be replicated and perpetuated. We instead focus here on the ethical issues arising from the use of big data in international neuroscience collaborations. Neuroscience innovation relies upon neuroinformatics, large-scale data collection and analysis enabled by novel and emergent technologies. Each step of this work involves aspects of ethics, ranging from concerns for adherence to informed consent or animal protection principles and issues of data re-use at the stage of data collection, to data protection and privacy during data processing and analysis, and issues of attribution and intellectual property at the data-sharing and publication stages. Significant dilemmas and challenges with far-reaching implications are also inherent, including reconciling the ethical imperative for openness and validation with data protection compliance and considering future innovation trajectories or the potential for misuse of research results. Furthermore, these issues are subject to local interpretations within different ethical cultures applying diverse legal systems emphasising different aspects. Neuroscience big data require a concerted approach to research across boundaries, wherein ethical aspects are integrated within a transparent, dialogical data governance process. We address this by developing the concept of “responsible data governance,” applying the principles of Responsible Research and Innovation (RRI) to the challenges presented by the governance of neuroscience big data in the Human Brain Project (HBP)

Data Governance in International Neuroscience Research

open access articl

Ethical Reflections of Human Brain Research and Smart Information Systems

open access journalThis case study explores ethical issues that relate to the use of Smart Infor-mation Systems (SIS) in human brain research. The case study is based on the Human Brain Project (HBP), which is a European Union funded project. The project uses SIS to build a research infrastructure aimed at the advancement of neuroscience, medicine and computing. The case study was conducted to assess how the HBP recognises and deal with ethical concerns relating to the use of SIS in human brain research. To under-stand some of the ethical implications of using SIS in human brain research, data was collected through a document review and three semi-structured interviews with partic-ipants from the HBP. Results from the case study indicate that the main ethical concerns with the use of SIS in human brain research include privacy and confidentiality, the security of personal data, discrimination that arises from bias and access to the SIS and their outcomes. Furthermore, there is an issue with the transparency of the processes that are involved in human brain research. In response to these issues, the HBP has put in place different mechanisms to ensure responsible research and innovation through a dedicated pro-gram. The paper provides lessons for the responsible implementation of SIS in research, including human brain research and extends some of the mechanisms that could be employed by researchers and developers of SIS for research in addressing such issues

Beyond Research Ethics: Dialogues in Neuro-ICT Research

open access articleThe increasing use of information and communication technologies (ICTs) to help facilitate neuroscience adds a new level of complexity to the question of how ethical issues of such research can be identified and addressed. Current research ethics practice, based on ethics reviews by institutional review boards (IRB) and underpinned by ethical principlism, has been widely criticized. In this article, we develop an alternative way of approaching ethics in neuro-ICT research, based on discourse ethics, which implements Responsible Research and Innovation (RRI) through dialogues. We draw on our work in Ethics Support, using the Human Brain Project (HBP) as empirical evidence of the viability of this approach

The resistible decline of European science

Using a new data set that allows us to analyze precisely the research output in all fields of science, we show that the gap in scientific performance between Europe, especially continental Europe, and Anglo-Saxon countries, especially the USA, is large. We measure research quality by the number of highly cited researchers in nineteen selected scientific fields. After controlling for different variables, such as par capita GDP and outlays in R&D, the differences in productivity between Anglo-Saxon countries and other countries are explained, not surprisingly, by the importance of English proficiency, but also by the quality of institutions and of governance of the countries in the studied sample, the latter being in all likelihood highly correlated with the governance quality of research institutions

Beneficial Artificial Intelligence Coordination by means of a Value Sensitive Design Approach

This paper argues that the Value Sensitive Design (VSD) methodology provides a principled approach to embedding common values in to AI systems both early and throughout the design process. To do so, it draws on an important case study: the evidence and final report of the UK Select Committee on Artificial Intelligence. This empirical investigation shows that the different and often disparate stakeholder groups that are implicated in AI design and use share some common values that can be used to further strengthen design coordination efforts. VSD is shown to be both able to distill these common values as well as provide a framework for stakeholder coordination

Technofixing the Future: Ethical Side Effects of Using AI and Big Data to meet the SDGs

While the use of smart information systems (the combination of AI and Big Data) offer great potential for meeting many of the UN’s Sustainable Development Goals (SDGs), they also raise a number of ethical challenges in their implementation. Through the use of six empirical case studies, this paper will examine potential ethical issues relating to use of SIS to meet the challenges in six of the SDGs (2, 3, 7, 8, 11, and 12). The paper will show that often a simple “technofix”, such as through the use of SIS, is not sufficient and may exacerbate, or create new, issues for the development community using SIS

The resistible decline of European science

Using a data set of highly cited researchers in all fields of science, we show that the gapin scientific performance between Europe, especially continental Europe, and the USAis large. We model the number of highly cited researchers in a sample of countries as afunction of physical and human capital and a country-specific, factor-augmentingHicks-neutral productivity term. We find that differences in productivity betweenAnglo-Saxon countries and other countries are not solely due to differences in the levelsof inputs. Not surprisingly, our results reveal the importance of English proficiency.However, they also show that the governance and design of research institutions thatcharacterize Anglo-Saxon countries, as well as a few other countries that have similarinstitutions, is another critical factor for research output.research performance, citations, knowledge economies, university governance

Empowerment or Engagement? Digital Health Technologies for Mental Healthcare

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare