Ethical Reflections of Human Brain Research and Smart Information Systems

Jiya Tilimbe

doi:10.29297/orbit.v2i2.113

Abstract

This case study explores ethical issues that relate to the use of Smart Information 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 understand 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 participants 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 program. 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.

Highlights

Considerable research is undertaken on the use of innovative computer technologies in understanding the human brain (Goertzel et al, 2010; Shapshak, 2018)
This case study showed how Smart Information Systems (SIS) is being used in one such research initiative that is taking place to understand the complex functions of the human brain
The ethical issues that emerge from the case study resonate with issues in the literature such as privacy and confidentiality, security of personal data as well as trust and accountability by the researchers and other stakeholders, when it comes to data manipulation

Summary

Introduction

Considerable research is undertaken on the use of innovative computer technologies in understanding the human brain (Goertzel et al, 2010; Shapshak, 2018). There is a risk of some researchers trying to ‘find out a way to de-anonymise data’ (Interviewee 2) because there is a push to innovate more and more, which is of concern when it comes to the ethical use of the SIS Reflecting on this issue, Interviewee 2 said that the HBP tries:. One of the ways of tackling the issue of discrimination, according to the interviewee, is perhaps to reflect on the ‘algorithms or machine learning procedures’ that are being used in the project This is related to having open and transparent processes where people can ask questions around data sources and intentions with the aim to identify areas that are being overlooked.

Conclusion

Limitations