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RTD info logoMagazine on European Research Special issue - November 2005   
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EUROPEAN CITIZENS' CONFERENCE
Title  On second thoughts…

A prestigious concert hall in Brussels bedecked with crystal chandeliers, sumptuous woodwork and parquet floors. A whiff of aristocratic luxury lies at the heart of the post-modern buildings in the ‘European district’ of the Belgian capital. In June 2005, 123 citizens from nine countries gathered together to hold a debate, in eight languages, on the current state of knowledge about the human brain and the challenges represented by the neurosciences. This initial Meeting of Minds Convention was the first plenary meeting of a process that was launched in several preparatory stages in each European country. The King Baudouin Foundation (BE) set this initiative in motion in co-operation with 12 partners and the backing of the European Union(1). The idea is to open up new lines of enquiry in the context of this cross-border democratic debate.

© Frank Toussaint
© Frank Toussaint
The Meeting of Minds homed in on the brain and the neurosciences, mindful that research activities and technological tools have made tremendous progress in this area, even though the social debate about the opportunities offered by this flood of knowledge is still somewhat restrained. "It is crucial not only for policy-makers and political, scientific and industrial stakeholders, but also community-based organisations to be privy to people's opinions in the very early stages of the options and policies that are adopted in the light of the new opportunities for therapies, prevention and social protection based on the neurosciences," according to Gerrit Rauws, Head of the King Baudouin Foundation. In view of the extremely broad-based debate, those taking part do not feel compelled to answer a specific question but they are able to express their concerns, aspirations and hopes. "As far as we are concerned, a participatory process is not important because of the amount of controversy a specific issue may spark, but because of the way it helps to promote a genuine give-and-take debate between people with expert knowledge and citizens," he stresses. "The participants are very taken with this and find it absolutely intriguing. To speak of the brain is to refer to the actual importance of the human being."

National preparations, European gathering
During the Meeting of Minds event the participants were handed a document – Foods for Thought and Debate on Brain Science – to help them become immersed in the issue. The report takes a meaningful look at six cases of individuals who have undergone neurological treatment in extremely different ways (see "Topics for reflection" box). The stories are mainly intended to offer food for thought, raising questions about the ethical, social, medical and psychological implications of these situations.

The meetings held in each country in the spring of 2005 provided an opportunity for panels of national participants to gather together with experts and host ‘facilitators’. They were tasked with making it easier for the panel members to take part and express themselves, while helping them to voice their opinions and raise the kind of questions they thought were instructive and worthwhile, considered in detail in the countdown to the debates during the first Convention, which was staged in Brussels in June this year.

During this European-level get-together, the talks were discussed across 14 tables comprising various nationalities, interpreters, one facilitator and a reporter. The language issue definitely creates the initiative's biggest challenge during this stage of the process. "The participants get to appreciate the linguistic confusions that may arise and gauge how hard it is for the interpreters to convey the subtle distinctions of certain expressions. Examples that come to mind are the English words soul, mind, brain, consciousness… It is quite a daunting task hunting down words that have the same meaning and a similar connotation in each language," Gerrit Rauws is keen to point out (see "Eight-language dialogue" box).

Michelle Seban, a French facilitator, came face to face in Brussels with a table occupied by a diversity of individuals and very many unfamiliar faces. "Everybody has something to say, but not everybody necessarily dares to take the floor. I remember having to convey the comments of one woman who started off being quite shy but who began to loosen up more and more over the course of the weekend." In common with all discussion groups, the idea is to put everybody at their ease and not to let the ‘leaders’ dominate the sessions. "A discussion group has to be able to build up a capacity for dialogue and people have to be helped to express their views on quite complicated issues. For example, when people turn up with prefabricated opinions it is important for them to realise that reality is not that cut and dried."

From one table to another, the mixed nationality panels therefore engaged in discussions in the light of a similar framework, based on case studies featured in the brochure. At the end of the debate, the selected reporter was tasked with summing up their ideas and the recommendations they were eager to spell out. This large-scale European creative thinking session produced 17 key items, from which six priority themes were singled out for their next meeting.

Preparing for the second round
First European citizens' debate – Brussels, June 2005 © Frank Toussaint
First European citizens' debate – Brussels, June 2005
© Frank Toussaint
These topics are now being mooted in each national group in the run-up to the forthcoming November meeting in Brussels. The first issue is focused on scientific research (the transparency of the findings, disseminating the knowledge, and ethical issues research may be faced with). Other more general subjects include the definition of ‘normality’ – where is the dividing line between normal and abnormal, is the perception of normal culture-specific, what kinds of mental disorder are regarded as abnormal? Other crucial issues concern economic interests (ties between drug companies and public authorities, conflicts of interests between citizens and drug manufacturers) and the actual social circumstances (equal access to treatment nationwide and at European level). Lastly, there is the question of acknowledging an individual's freedom to make choices in a medical situation (may treatment be imposed, how can individuals be offered all the facts they need to make a choice, what are the insurance requirements that have to be met for the cost of such treatment to be refunded or otherwise, etc.?).

During this second international meeting the participants will be called upon to debate, face up to, summarise, draw conclusions from and reach an agreement on a number of proposals due to be unveiled by various officials, such as Janez Potočnik, European Commissioner for Science and Research. The next step is to decide how the ideas may be taken into account. "All the project partners have the task of presenting the findings of their individual countries," says Gerrit Rauw. "The event will provide an opportunity for various systems of communication and discussions of these conclusions, workshops, open debates and press conferences. Denmark, the Netherlands and the Flemish-speaking region of Belgium have decided that their findings should be presented to MPs. This last lap of the project is vital for ensuring a genuine impact is made. It is up to us to convince the policy-makers and various stakeholders just how crucial the initiative is and just how relevant the findings are."

Topics for reflection

Child ADHD
Child ADHD
Hyperactive children generally fall into two categories: those who are unable to keep still and those with poor concentration. Boys seem to be four times more prone to this condition than girls, while some experts reckon 10% of schoolchildren aged five to 12 are "hyperkinetic". The medicinal products that are available raise various questions. Should they be used, when and for how long? Is it the right way to treat a symptom, if that is all it is? What are the potential side-effects?

Alzheimer’s disease
Screening tests are available for Alzheimer’s disease and medicinal products are supposed to delay its impact. How is the patient's private life, career and mental state affected by "knowing"? Should these tests be widely available thus paving the way for extremely expensive treatment, the acceptance of which by the social security system differs considerably from one country to another.

Drug-induced stimulation
Drug-induced stimulation
Students may be delighted after passing their examinations, having relied on pills to jog their memories or to keep themselves awake. These are just some examples of the kinds of performance-enhancement drugs that are becoming increasingly common. What are the health implications? Does doping raise ethical problems?

Brain electrodes
Brain electrodes
Surgical means may be deployed to implant one or more electrodes (Deep Brain Stimulation) so as to treat illnesses such as Parkinson's or Tourette’s syndrome. Can these treatments pave the way to other operations that may mechanically alter patterns of behaviour, or even personalities? Do these operations treat a patient's suffering? How can the dividing line between illness and personal suffering be decided in this type of case?

Neuro-imaging
Imaging is used to detect and locate various brain disorders with ever-more precision. Can this type of investigation be deployed to detect certain behavioural factors or help to prove who is responsible for wrongdoing? What kind of legislation is required to establish safeguards for the use of medical imaging and to restrict its objectives? 



(1) King Baudouin Foundation (BE), University of Westminster (UK), Flemish scientific and technological policy review institute (BE), Danish Board of Technology (DK), Cité des Sciences et de l'Industrie (FR), Stiftung Deutsches Hygiene Museum (DE), Fondazione Idis- Citta della Scienza (IT), Rathenau Institute (NL), Science Museum's Dana centre (UK), University of Debrecen (HU), Eugenides Foundation (EL), Liège University (BE).


Printable version

Features 1 2 3 4 5
  Two-way communication
  Merits of informality
  The EMBO and its many activities
  Campaigning for scientific intelligence
  On second thoughts…

  READ MORE  
  Eight-language dialogue

During the Convention held in Brussels, 14 tables comprising eight to nine participants were occupied by up to six different nationalities, offering various language permutations (ranging from French-Danish to English-Hungarian-Italian) and various types of interpreting, consecutive or simultaneous ...
 
  Participants

In nine countries (Germany, Belgium, France, Denmark, the Netherlands, Hungary, Greece, the United Kingdom, and Italy) invitations to take part in the Meeting of Minds were sent at random, reflecting the methods of the polling institutes, to individuals who are "representative of the national average". ...
 
  Evaluations

Meeting of Minds was the first trial of the European Citizens’ Deliberation (ECD) method, which its sponsors are eager to repeat in other international debates. How can it be fine-tuned? What items need changing? Are there any potentially cumbersome procedures and shortcomings? These questions ...
 

  TO FIND OUT MORE  
 
  • Meeting of Minds
    There is a very comprehensive site where various Convention documents and reports may be downloaded, and which offers several brain- and neuroscience-related links.
  •  


       
      Top
    Features 1 2 3 4 5
      Eight-language dialogue

    During the Convention held in Brussels, 14 tables comprising eight to nine participants were occupied by up to six different nationalities, offering various language permutations (ranging from French-Danish to English-Hungarian-Italian) and various types of interpreting, consecutive or simultaneous depending on the case. Willy Visser, a member of Conference Interpreters International (CII), the company tasked with supervising the language arrangements, said it was a "real headache and a first, to some extent. Conferences and meetings of the European authorities take place every day, where up to 20 languages may be interpreted, but the specific challenge here was being able to bring citizens into contact with each other, not individuals who are well-versed in multilingual meetings." Consequently, CII sought to put together a team of interpreters that not only had key language skills but also boasted the kind of open-minded attitude needed to become closely involved in this kind of experience. "Most of them came away full of enthusiasm at being able to attend this live experimental exercise in democracy."

      Participants

    In nine countries (Germany, Belgium, France, Denmark, the Netherlands, Hungary, Greece, the United Kingdom, and Italy) invitations to take part in the Meeting of Minds were sent at random, reflecting the methods of the polling institutes, to individuals who are "representative of the national average". Those who seem to be the most keen and likely to be willing to offer some of their personal thoughts and devote some time to this enterprise were selected: 51% of the panel members are female and 49% are male, 65% live in an urban environment and 35% in the countryside, while the age categories involved are 18-24 (8%), 25-34 (23%), 35-44 (27%), 45-54 (15%), 55-64 (2%), and +65 (5%).

      Evaluations

    Meeting of Minds was the first trial of the European Citizens’ Deliberation (ECD) method, which its sponsors are eager to repeat in other international debates. How can it be fine-tuned? What items need changing? Are there any potentially cumbersome procedures and shortcomings? These questions will be featured on the agenda for the final national and European meetings. When the June meeting drew to a close, the participants were asked to rate their feelings about "what had been achieved" up to now. 26% said they were genuinely very satisfied, 63% very satisfied, 9% had mixed feelings, and 2% were dissatisfied. 73% described the work undertaken as highly important, and 23% as important. 60% were very enthusiastic about the continuation of the process and its success, while 36% said they were enthusiastic.

    TO FIND OUT MORE

    • Meeting of Minds
      There is a very comprehensive site where various Convention documents and reports may be downloaded, and which offers several brain- and neuroscience-related links.

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