Key participants and communication links of the Human Brain Project’s ethics discourses (Stahl et al 2019)

Beyond Research Ethics: Dialogues in Neuro-ICT Research’ is the title of a recent article (Stahl et al 2019) published by the members of Ethics Support team of the Human Brain Project (HBP). This article outlines a dialogical approach that the Ethics Support team applies in its work in the HBP. This approach offers an alternative to current research ethics review procedures which are often seen as cumbersome, bureaucratic and stifling research.

What’s wrong with research ethics?

The starting point to develop a dialogical approach to ethics are the limitations of the current research ethics practices. These practices are increasingly standardized, formalized and institutionalized across disciplinary, national and cultural boundaries. They are typically based on ethics reviews undertaken by institutional review boards (IRB) or research ethics committees (REC). When standardised applications to these bodies are deemed satisfactory, researchers are issued ethics approvals to proceed.

While such highly standardised ethics procedures have numerous advantages, they also have important limitations. They are often seen as an additional administrative burden that takes away resources from research without necessarily fulfilling the main aim of research ethics, which is the protection of research subject. Such a priori applications can lead to a tick box mentality rather than facilitate reflective practices. Moreover, in cases of novel research, possible consequences can be uncertain and therefore outside the scope of the IRB review.

As stated in the article, ‘the key problem of current research ethics is that to some degree it achieves the opposite of what ethics should do. Instead of opening up, questioning and debating ethical questions, it closes them down and removes them from critical scrutiny. Furthermore, it removes reflection upon ethical issues from the research process and makes shared forms of responsibility impossible’ (Stahl et al 2019:5).

Alternative approach: ethics dialogues

The article argues that ethics do not have to be a top-down imposition and suggests a dialogical approach as a more contextualized and sensitive way to address ethical issues. A dialogical approach draws on discourse ethics and is inclusive, flexible and responsive. This allows for a broader view encompassing established ethics procedures but remaining open to other influences.  

Additionally, a dialogical approach builds on the currently popular concept of Responsible Research and Innovation (RRI). Recently RRI has been promoted by major research funding organizations including the European Commission. In the 2014 Rome Declaration, RRI has been defined as ‘the ongoing process of aligning research and innovation to the values, needs and expectations of society’. According to the European Commission, the key elements of RRI are gender equality, ethics, science education, open access, public engagement and research governance. To implement RRI, the UK Engineering and Physical Science Research Council (EPSRC) has established the so-called AREA framework based on anticipation, reflection, engagement and action. The HBP implements the AREA framework.  

Discourse ethics and RRI demonstrate that ‘there are approaches to ethics and to dealing with possible risks and downsides of research and innovation which can look very different from the established research ethics process. They move away from a linear and expert-centered view of ethics towards a more open, discursive and responsive approach. In these communication-oriented views of ethics, it is not necessarily assumed that ethical issues can be identified in advance. It is also not taken for granted that the objective of the activity is beneficial and acceptable to the relevant stakeholders. Instead, an open exchange between researchers and stakeholders is employed to identify and highlight possible issues. The responsibility for addressing these issues is not taken for granted, but can also be subject to the discussion’ (Stahl et al 2019: 6).

Ethics Dialogues in the HBP

While a dialogical approach to ethics can be suitable for diverse disciplines and organizational configurations, it is particularly useful for addressing ethical issues in a complex multi-disciplinary, multi-organizational and multi-national large-scale research project such as the HBP. The Ethics Support work-package applies a dialogical approach to a broad range of ethics procedures and issues in the HBP. This  includes compliance, data governance, data protection and dual use. Choosing ‘Ethics Dialogues’ as the title for the blog, exemplifies the central role that this concept plays for the Ethics Support work-package.

This approach involves interaction with many internal and external stakeholders. Internal collaborators include other work-packages in the Ethics and Society sub-project as well as all other sub-projects, in particular their Ethics Rapporteurs. A crucial role in ethics dialogues is played by the HBP’s Ethics Advisory Board consisting of independent experts.

While the dialogical approach has many advantages of identifying and addressing ethics issues in a complex environment of the HBP, it also has its limitations and challenges. Resources required for ongoing dialogues can be considerable and exceed those necessary for traditional research ethics. Moreover, institutionalization of ethics dialogues can also lead to different types of  bureaucratization and standardization. Furthermore, a dialogical approach can be open to manipulation and be politically misused by well-organized interests. A deliberative approach to ethics needs to take into account all these limitations and risks and make sure that the benefits of dialogues outweigh their potential limitations.

While this ethics dialogues approach has been developed in the particular context of the HBP, it can provide useful lessons and insights for other contexts and projects as well. In particular, it can be relevant for other brain initiatives as well as complex collaborative projects addressing a broad-range of societal challenges.

Reference:

Stahl BC, Akintoye S, Fothergill BT, Guerrero M, Knight W and Ulnicane I (2019) Beyond Research Ethics: Dialogues in Neuro-ICT Research. Frontiers in Human Neuroscience 13:105. https://doi.org/10.3389/fnhum.2019.00105

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