Volterra Lecture: Lise Bitsch PhD - “Public engagement work in the Human Brain Project"

What are citizen needs, concerns and wishes for the digitalization of brain science? What would they like researchers to know about working with citizen data? What ethical and social needs should brain researchers keep in mind when developing neurotechnologies? Lise Bitsch presented her work leading public engagement initiatives in the Human Brain Project to engage diverse stakeholders to identify priorities, concerns, and potential benefits of emerging digital technologies. These are relevant both for scientific projects and for governance of AI in society.  

Lise Bitsch, Ph.D., is Senior Project Manager at the Danish Board of Technology Foundation.

The Human Brain Project, launched in 2013 with EUR 607 million over 10 years. It aims to put in place a cutting-edge research infrastructure that will allow scientific and industrial researchers to advance our knowledge in the fields of neuroscience, computing, and brain-related medicine. The project cuts across neuroscience, health sciences, informatics, and computing disciplines and is tied to ambitious regional goals for innovation and industry. 

At the same time, the project addresses emerging social and ethical implications of brain research. Lise Bitsch of the Danish Board of Technology Foundation (Fonden Teknologiradet) is the work package lead on Responsible Research and Innovation (RRI) the Human Brain Project. In October 2022, Lise delivered the Volterra Lecture at the Digital Life annual conference, held in Trondheim, Norway. The following highlights key messages from the keynote address.  


Public engagement in biotechnology: Why? 

In short, public engagement is about creating overlaps of productive learning between representatives of science, policy, civil society and lay citizens. That is, public engagement is both expert and citizen engagement. Fundamental arguments for doing public engagement include: 

  • Science is a social and political activity, and therefore it should be open to democratic decision-making. Public engagement is a way to prioritize issues and resources, and advance scientific and technological solutions that are socially desirable and acceptable 
  • Citizens and other stakeholders hold valuable knowledge from their lived experiences 
  • Learning about the perspectives, needs, wishes and desires of others, provides a basis for better decision-making 

Public engagement also offers opportunities at a practical level: 

  • Better understand what the problem(s) is/are 
  • Understand (potential) conflict 
  • Get new ideas, develop new solutions 
  • Learn what decisions have the most support across a diverse audience 
  • Build new communities and networks 

Public engagement can be done at any time of a research and innovation process. However, ““There’s an inherent contradiction. In the beginning when you are formulating visions, the possibility to influence directions is high because nothing is really set yet, but motivation to engage is low as implications of a development are often not clear. The motivation to engage increases when you get closer to an actual use context, but then options for influence have decreased as many choices will already have been made on how a new technology should work and be implemented,” said Lise. 

Image from Lise Bitsch Volterra lecture, demonstrating the trade-off between the possibility to influence the research project versus the motivation of the research team to engage with the public

Understanding AI in brain science 

In her keynote, Lise provided an example of public engagement in the Human Brian Project, which aims to establish its central legacy through EBRAINS, a co-created, inclusive research infrastructure at the EU level to promote digitally supported brain science, medicine, and computing technologies.  

What are the social and ethical issues and future uses? How can we anticipate the possible impacts on healthcare, law, human rights, policy, and democracy?  

Public engagement has been used in the project as a tool to engage a diverse group of stakeholders through multidisciplinary expert workshops, citizen meetings across Europe since the start of the HBP. Engagement has been organized on “privacy and data governance in research projects”, “Dual Use”, “Future social and ethical issues of AI development and use”, “Disease signatures and international data governance”.  

In her lecture, Lise presented results from the engagement activities on AI, that were carried out from 2019-2020. In the first step, a multi-disciplinary expert workshop was organized in March 2019. Enthusiasm was on several benefits, such as  

  • Increase in free services 
  • Potential for diagnostics and personal medicine 

alongside several concerns on policy, rights, and societal impact, including: 

  • Manipulation and abuse of power 
  • Who decides what is good and correct information 
  • Power relations between state and private actors 
  • Discrimination and bias 
  • Impossibility of holding social media platforms accountable 
  • Surveillance by whom, and of whom 
  • Lack of education in data protection 
  • Data collection by private actors 
  • Who will enjoy the benefits? 
  • Continued need for good understanding of disease mechanisms 

The next step included GlobalSay dialogue meetings with a total of 928 citizens in 13 European countries who met in their own homes in groups of 5-8 people to deliberate on some of the issues from the expert workshops. Citizens voiced views that AI should be a decision-support tool that is regulated and certified; explainable and understandable to both citizens and AI-users; as well as concerns about political use and social manipulation. Some commented that they have already adapted their online behavior to limit how their data is collected and used.  

“In 2018/19, discussions on AI, primarily revolved on the future labor market. In one workshop, we were able to collect a much richer overview, and show that implementation of AI is about much more than discussions of the future labor market – a point that is widely recognized today,” said Lise. “There’s much more at stake here in terms of how we govern and steer this development.” These findings are of high relevance to biotechnology and life science projects, such as HBP."  

Through this work, Lise’s team gained a better understanding of the legal challenges, good data governance, ethical issues, and societal questions on value and benefit stemming from the Human Brain Project. This work feed into several developments of the HBP and EBRAINS. The HBP RRI network is building training tools for use in the future EBRAINS research infrastructure and has also developed an EBRAINS vision of Ethics and Society that includes public engagement as a future priority. 

Challenges to public engagement activities include the way science education and career advancement is set up. Largely, researchers are educated and trained within specific siloed disciplines, there is limited time and funding for public engagement, uncertainty on how doing public engagement could impact career trajectories, and most fundamentally, a lack of common understanding of the why, are major challenges for public engagement.  

Yet, citizens can understand and debate complex issues and want to be engaged. The full pipeline of scientific research and innovation – from vision to implementation – can use public engagement and there is potential to harvest value.  

In addition to the Volterra keynote, Lise led a workshop with Digital Life participants on public engagement in biotechnology.  


Speaker bio 

Lise Bitsch, Ph.D., is Senior Project Manager at the Danish Board of Technology Foundation. She is the work-package lead on Responsible Research and Innovation (RRI) the EU flagship Human Brain Project (HBP), and she was the coordinator of the EU co-creation project GoNano (Governing Nanotechnologies through societal engagement). She is also member of the Stakeholder Board for the EU project EnvironMENTAL. She specialises in citizen and expert engagement on science and technology, and she has a PhD in Science and Technology Studies (STS) from Twente University, The Netherlands. 

About the Volterra lecture series 

Since 2016, the Centre for Digital Life has honored the Italian mathematical biologist Vito Volterra with a lecture series with high-profile contributors within the field of digital biotechnology and life sciences. Vito Volterra became professor of rational mathematics at the University of Pisa in the late 1800s, coming from a background in mathematics and physics and applying this knowledge to biology. In 2022, Digital Life Norway relaunched the Volterra series after a hiatus during the pandemic and resumed in a new format at the annual conference.  

Tags: Volterra Lectures, Arrangementer
Published Nov. 14, 2022 12:45 PM - Last modified Nov. 23, 2022 10:51 AM