Publications on Ethics and Society
All publications from the Human Brain Project Work Package 9, can be found in a compilation here (up to 2021):
Social, Ethical & Reflective work in the Human Brain Project
In the following, we present a selected list of recent publications related to the topics and tools in this toolkit:
From Responsible Research and Innovation to responsibility by design
Stahl, B.C., Akintoye, S., Bitsch, L., Bringedal, B., Eke, D., Farisco, M., Grasenick, K., Guerrero, M., Knight, W., Leach, T., Nyholm, S., Ogoh, G., Rosemann, A., Salles, A. Tratting, J. and Ulnicane, I., 2021. Journal of Responsible Innovation, 8(2), pp.175-198.
Abstract:
Drawing on more than eight years working to implement Responsible Research and Innovation (RRI) in the Human Brain Project, a large EU-funded research project that brings together neuroscience, computing, social sciences, and the humanities, and one of the largest investments in RRI in one project, this article offers insights on RRI and explores its possible future. We focus on the question of how RRI can have long-lasting impact and persist beyond the time horizon of funded projects. For this purpose, we suggest the concept of ‘responsibility by design’ which is intended to encapsulate the idea of embedding RRI in research and innovation in a way that makes it part of the fabric of the resulting outcomes, in our case, a distributed European Research Infrastructure.
Pseudonymisation of neuroimages and data protection: Increasing access to data while retaining scientific utility
Eke, D., Aasebø, I.E., Akintoye, S., Knight, W., Karakasidis, A., Mikulan, E., Ochang, P., Ogoh, G., Oostenveld, R., Pigorini, A., Stahl, B.C., White, T., and Zehl, L., 2021. Neuroimage: Reports, 1(4), p.100053.
Abstract:
For a number of years, facial features removal techniques such as ‘defacing’, ‘skull stripping’ and ‘face masking/blurring’, were considered adequate privacy preserving tools to openly share brain images. Scientifically, these measures were already a compromise between data protection requirements and research impact of such data. Now, recent advances in machine learning and deep learning that indicate an increased possibility of re-identifiability from defaced neuroimages, have increased the tension between open science and data protection requirements. Researchers are left pondering how best to comply with the different jurisdictional requirements of anonymization, pseudonymisation or de-identification without compromising the scientific utility of neuroimages even further. In this paper, we present perspectives intended to clarify the meaning and scope of these concepts and highlight the privacy limitations of available pseudonymisation and de-identification techniques. We also discuss possible technical and organizational measures and safeguards that can facilitate sharing of pseudonymised neuroimages without causing further reductions to the utility of the data.
Responsible Research and Innovation & Digital Inclusiveness during Covid-19 Crisis in the Human Brain Project (HBP).
Grasenick, K., and Guerrero, M. (2020). Journal of Responsible Technology 1.
Abstract: Covid-19 changes the lives for all of us: Institutions and other places are closed; it is not possible to see friends and family personally and keeping distance is the topmost commandment. Therefore, most of us are working from home and digitalisation is on the way up in many aspects of life. The HBP has a long-lasting experience of interdisciplinary collaboration by virtually bridging distances because its involved partners are not only complex but also spatially remote. In these challenging times of the pandemic, the HBP & Diversity and Equal Opportunities Committee together with the Ethics Rapporteur Programme has started “I-include”, an Initiative for Inclusive Digital Engagement to make sure that no one is left behind virtually and that diversity matters in digital collaborations. It offers recommendations based on practical experiences of HBP members. Considering this new framework during the current situation is a way to ensure that our digitally distributed work becomes a valuable and successful experience corresponding to the standards of Responsible Research and Innovation (RRI). RRI is a dynamic, iterative process in which all stakeholders in research and innovation become mutually responsive and share responsibility for both the process and its outcomes. Even and particularly in difficult times.
Of Ethical Frameworks and Neuroethics in Big Neuroscience Projects: A View from the HBP
Arleen, S. & Farisco, M. (2020). AJOB Neuroscience 11, no. 3.
Abstract: Covid-19 changes the lives for all of us: Institutions and other places are closed; it is not possible to see friends and family personally and keeping distance is the topmost commandment. Therefore, most of us are working from home and digitalisation is on the way up in many aspects of life. The HBP has a long-lasting experience of interdisciplinary collaboration by virtually bridging distances because its involved partners are not only complex but also spatially remote. In these challenging times of the pandemic, the HBP’s Diversity and Equal Opportunities Committee together with the Ethics Rapporteur Programme has started “I-include”, an Initiative for Inclusive Digital Engagement to make sure that no one is left behind virtually and that diversity matters in digital collaborations. It offers recommendations based on practical experiences of HBP members. Considering this new framework during the current situation is a way to ensure that our digitally distributed work becomes a valuable and successful experience corresponding to the standards of Responsible Research and Innovation (RRI). RRI is a dynamic, iterative process in which all stakeholders in research and innovation become mutually responsive and share responsibility for both the process and its outcomes. Even and particularly in difficult times.
Fair Projects – Bad Data? Evaluating the Gender Balance in Science Projects
Kleinberger-Pierer, M., Pohn-Weidinger, S. & Grasenick, K. (2020). Journal for Research and Technology Policy Evaluation (50). pp. 60-71.
Researchers are more and more frequently required to report the gender balance of their teams in order to receive funding for their research projects. In Europe for instance, Horizon 2020 guidelines determine that applications with a balanced, 50/50 representation of women and men will be given preference, and each project must at least justify the composition of their teams and leadership positions. In scientific fields where women are still a minority, like robotics or artificial intelligence, or many STEMM fields in general, this approach has left the applicants with the issue of how to justify the ratio of women on their teams. For individual projects and project leaders, realistic objectives are required that take into account specific framework conditions in different scientific fields. This paper examines approaches to measure the disciplinary background and career development of women and men in science by assessing a range of available data sources. It provides insights on how to derive figures allowing science projects to evaluate their gender ratios against a possible underrepresen-tation of women.
Is the European Data Protection Regulation sufficient to deal with emerging data concerns relating to neurotechnology?
Rainey, S. McGillivray, K., Akintoye, S., Fothergill, T., Bublitz, C. & Stahl, B. Journal of Law and the Biosciences, Volume 7, Issue 1.
Abstract: Research-driven technology development in the fields of the neurosciences presents interesting and potentially complicated issues around data in general and brain data specifically. The data produced from brain recordings are unlike names and addresses in that it may result from the processing of largely involuntarily brain activity, it can be processed and reprocessed for different aims, and it is highly sensitive. Consenting for brain recordings of a specific type, or for a specific purpose, is complicated by these factors. Brain data collection, retention, processing, storage, and destruction are each of high ethical importance. This leads us to ask: Is the present European Data Protection Regulation sufficient to deal with emerging data concerns relating to neurotechnology? This is pressing especially in a context of rapid advancement in the fields of brain computer interfaces (BCIs), where devices that can function via recorded brain signals are expanding from research labs, through medical treatments, and beyond into consumer markets for recreational uses. One notion we develop herein is that there may be no trivial data collection when it comes to brain recording, especially where algorithmic processing is involved. This article provides analysis and discussion of some specific data protection questions related to neurotechnology, especially BCIs. In particular, whether and how brain data used in BCI-driven applications might count as personal data in a way relevant to data protection regulations. It also investigates how the nature of BCI data, as it appears in various applications, may require different interpretations of data protection concepts. Importantly, we consider brain recordings to raise questions about data sensitivity, regardless of the purpose for which they were recorded. This has data protection implications.