Connecting Brains and Society

(2004)

How will we use the new-found knowledge of the brain?

“Neuroscience will have an impact as powerful as that of Darwinism.”, stated Tom Wolf, the American novelist. The future will judge his clairvoyant skills. But there is no doubt that there exist high expectations on the development in neuroscience.  Neuroscience will deliver profound insight in the nature of the brain and will probably provide solutions for brain disorders.  Neuroscience might also make it possible to slow aging or deliver drugs to enhance brain performance.  The rapid growing field of brain imagining will make it possible to diagnose diseases and disorders (even long before they will strike) but maybe also to search for delinquency or to monitor thoughts.

It is clear from above examples that brain science raises ethical and social questions.  ‘Meeting of Minds. A European Citizens’ Dialogue on Brain Science’ is an unique European project that run in 2005-2006.  The central objective was to address these issues and to ensure that they are heard and acted upon.  The core of the project was a European panel of 126 citizens from 9 European countries.  During 3 national and 2 European gatherings (5 weekends), they assessed the societal aspects of brain science.

But this project was not only about participation of citizens into discussions on the development of science and technology (i.e. participatory Technology Assessment (pTA)).  From the very beginning, major effort was put in communication about societal aspects of brain sciences and involvement of relevant stakeholders and experts. 

In short, the project run on the basis of a 10-steps methodology, hereby using existing pTA-experiences.
1. Issue-analysis: a group of leading European experts and stakeholders identified the societal aspects of brain science.  This resulted in the publication of a book   and a citizens information brochure 
2. In every country, the local partner recruited a panel of 14 citizens
3. At the same time, facilitators at national and European level were selected and trained
4. In Spring 2005, there was a first national citizens’ meeting.  During one weekend, the different panel explored the societal aspects of brain science.  This resulted in a long list of possible topics and issues
5. Early June 2005, the first European Citizens’ Convention took place in Brussels. Here, the 126 citizens mutually discussed this list.  By the end of the weekend, this dialogue resulted in 6 clearly described themes (Regulation and Control, Normalcy versus Diversity, Public Information, Pressure from Economic Interests, Equal Access to Treatment, Freedom of Choice), the common agenda for the parallel national assessments.
6. In Autumn 2005, the national panels worked during 2 weekends on these themes.  The first weekend, they formulated questions for experts and stakeholders.  The second weekend, the citizens had an extensive dialogue with the selected experts and stakeholders, based on their questions.  Each panel then produced an own national report, with conclusion and recommendations for policy-makers and stakeholders.
7. In January 2006, the citizens met again in Brussels.  After three long days of dialogue and debate, of exchange with European experts and stakeholders, they succeeded in realising an integrated European Citizens Assessment on the societal aspects of brain science.  On the 23th of January, they presented their final report during an official ceremony in the European Parliament.
8. Since then, an intensive process of European and national policy advice and dissemination activities took place, presenting and discussing the results of this project on every possible national and European forum.
9. During the whole process, every piece of produced knowledge, either content or methodology, was analysed, written down and communicated in reports, books, manuals, articles,…
10. Every step in this process has been evaluated, ongoing internally as well as by an independent external partner 

The citizens’ deliberations resulted, on European level, in 37 recommendations, grouped under the above named six themes.  During the policy advice and dissemination activities, policy-makers and experts in the field judged these recommendations to be relevant and of high quality.  Since it is not possible to list every single recommendation here, the most important recommendations are highlighted bellow:

• A major concern about the poor level of effective communication between the scientific world and the lay public was reflected in the ten recommendations made under this theme. One of these asks regulators to: Provide early training for science students in communication skills so that they can inform the lay population without oversimplifying the information; to Encourage scientists to produce “popular” accounts of their work; and to provide expert help for this.
• Unsurprisingly, the citizens were also worried about the role played by the pharmaceutical industry in the field of brain science and under this theme they made three recommendations, one of which stressed that regulators should: Provide additional incentives for pharmaceutical companies to take up appropriate research in fundamental, applied or in rare diseases research. This citizens’ recommendation provides powerful support for the continuing need for EU regulators to develop mechanisms for balancing societal and market interests.
• Naturally, there was similar concern about equality of access to health care provision in this field and the citizens made 8 related recommendations including a request for regulators to: Establish long-term priorities ensuring that all European citizens have non-discriminatory equal access to equal treatment in the neurological field. Here they were unwittingly ahead of the game as the European Commission was contemporaneously preparing its Green Paper on “Improving the mental health of the population: Towards a strategy on mental health for the European Union”  which is in part concerned with this recommendation. Accordingly, the Meeting of Minds project team responded to the Commission’s consultation process on this Green paper highlighting the relevant citizens’ recommendations.
• Generally, the citizens’ recommendations were very supportive of research. However, they did not want research that resulted in pressures to label natural variability as abnormal (and “chemically correctable”). 7 related recommendations were made in this area, the third of which requests the Commission to: Promote research to clarify the range of variations that exist within “normality” and identify what conditions should be labelled as “abnormal” in order to avoid unnecessary treatment and reduce the modern tendency to medically treat every departure from the norm. This recommendation might be met under the next Framework Programme for EU Research (FP7). In FP7, the Second Activity under the Health Theme is entitled “Translating research for human health” and the second bullet point under this activity is concerned with brain research under healthy and disease conditions. (Underlying this theme is the huge variability of brain morphology and the judgement of what constitutes normality.)
• Since this was a European level project, the citizens were of course concerned with the regulatory system and in particular with an ethical oversight of brain science. 5 recommendations were made, the first of these requesting the authorities to: Establish a pan-European ethical and legal advisory committee. They were worried that a variety of ethical views from across Europe could result in an unacceptably wide range of responses to sensitive areas of research. An advisory committee already exists at European level, namely the European Group on Ethics in Science and New Technologies (EGE) . However, the EGE is simply an advisory committee (to the European Commission) whereas the citizens want a central ethical committee that “lays down guidelines for brain research”.
• Staying with ethics, the citizens were worried about the ability to exercise freedom of choice in the mental health area and made 4 recommendations related to this issue. One of these recommends the: Development of a European procedure for nominating trusted representatives for mentally handicapped individuals (“trusted persons”). Clearly, this is a human rights issue and there seems to be a need for a uniform system of representation for the mentally handicapped throughout the EU.

Project characteristics

• Initiative of a partner consortium of 12 organisations from 9 countries
• Running from 2004 - 2006
• Project coordination and co-funding: King Baudouin Foundation
• With the support of the EC, DG Research, 6th FP, Science and Society Action Plan

List of Partners:

• King Baudouin Foundation (BE)
• University of Westminster (UK)
• Flemish Institute for Science &Technology Assessment (BE)
• Université de Liège (BE)
• Danish Board of Technology (DK)
• Cité des Sciences et de l’Industrie (FR)
• Deutches Hygiene-Museum (DE)
• Eugenides Foundation (EL)
• University of Debrecen (HU)
• Fondazione Idis - Città della Scienza (IT)
• Rathenau Institute (NL)
• Science Museum’s Dana Centre (UK)