Assessing Debate and Participative Technology Assessment

(ADAPTA) Project n° BIO – CT98-0318

Annex n°2

THE FRENCH NATIONAL REPORT

Céline Varnier Gérald Assouline , Pierre-Benoit Joly (Editors)

INRA Grenoble - QAP Décision

January 2001

CONTENTS INTRODUCTION .................................................................................................................... 1 Gérald Assouline and Pierre-Benoit Joly CHAPTER 1 - THE NATIONAL CONTEXT IN FRANCE ............................................... 2 Céline Varnier 1.

The cultural and political French tradition .................................................................... 2 1.1. What are the factors which could hinder the development of PTA experiences in France?............................................................................................................ 2 1.1.1. A centralised technocratic French State .................................................................. 2 1.1.2. Government of experts? ........................................................................................... 2 1.1.3. What about the technical democracy in France?..................................................... 3 1.2. A rupture in the culture of the secrete decision : towards more information / participation for the public? .................................................................................................... 4 1.2.1. More information to the public ................................................................................ 4 1.2.2. Towards attempts of participatory technology Assessment? The cases observed by the ADAPTA project....................................................................... 5 2. Actors involved in public debate about biotechnology .................................................. 7 2.1. Actors involved in public debate from specialised arenas.............................................. 7 2.1.1. The political actors................................................................................................... 7 2.1.2. The advice committees ............................................................................................. 8 2.2. Space of mobilisation.................................................................................................... 11 2.2.1. The NGOs and associations : core of a mobilisation process…............................ 11 2.2.2. ….or a tool of a bio-power"bio-pouvoir"............................................................... 12 2.2.3. The media ............................................................................................................... 12 2.2.4. The scientific community........................................................................................ 13 2.3. The industrial /financial/economical actors in reaction of the mobilisation................. 13 2.3.1. Industrial actors in GMOs case ............................................................................. 13 2.3.2. Industrial actors in genetic testing case................................................................. 13 CHAPTER 2 - CASE STUDY OF URBAN TRANSPORT: TERRITORIAL DIRECTIVE FOR THE DEVELOPMENT OF NICE....................................................... 15 Jacques Lolive, Pierre-Benoit Joly and Gérald Assouline

Introduction ............................................................................................................................ 15 1. Results............................................................................................................................... 16 1.1. Mobilisation against major projects on the Côte d’Azur.............................................. 16 1.1.1. Failure of the first SDAU and motorway projects in the Nice agglomeration inter-communal syndicate......................................................................... 16 1.1.2 Renewal of projects in the Cannes-Grasse-Antibes agglomeration and building up of a second conflict ................................................................................. 16 1.1.3 Associations' entry onto the scene in controversy over networks, and counter-assessment..................................................................................................... 17 1.1.4 Results of the mobilisation : cancellation of the Cannes-Grasse-Antibes SDAU and rejection of the motorway project .............................................................................. 17 1.2. Planning a territory under pressure: the Alpes-Maritimes DTA................................... 18 i

1.2.1 The DTA opens a window onto participation ........................................................ 19 1.2.2 The associations in the DTA................................................................................... 20 1.3 Consecutive reframing of urban transport policy ......................................................... 22 1.3.1 Factors of change................................................................................................... 22 1.3.2 Communes in the middle of the bridge................................................................... 23 2 Analysis............................................................................................................................. 24 2.1 Indispensable mobilisation ........................................................................................... 25 2.1.1 A policy hardened by expertise and projects ......................................................... 25 2.1.2 The freezing of projects re-opens the field of possibilities..................................... 26 2.2 How to participate without a specific procedure ? ....................................................... 27 2.2.1 The dispositif de participation................................................................................ 27 2.2.2 Arenas, forums and antichambers.......................................................................... 28 2.2.3 Passeurs and emergent personalities..................................................................... 29 2.3 The stakes of expertise.................................................................................................. 30 2.3.1 Network-expertise (definition)................................................................................ 30 2.3.2 Outline of a new expertise-network ?..................................................................... 31 2.3.3 Connection with political decision-making............................................................ 33 3. Conclusion ........................................................................................................................ 35 Glossary of acronyms ............................................................................................................. 37

CHAPTER 3 - THE FRENCH CITIZENS CONFERENCE AS A PARTICIPATIVE TECHNOLOGY ASSESSMENT.......................................................................................... 38 Céline Varnier, Pierre-Benoit Joly and Gérald Assouline Introduction ............................................................................................................................ 38 Methodology............................................................................................................................ 38 1. The conference as a social and political experimentation : origin, process and outcome ........................................................................................... 39 1.1. Origin of a French PTA about GMO ............................................................................ 39 1.1.1. Chronological mark of a controversy .................................................................... 39 1.1.2. Why the government decided to organize this Conference ? ................................. 42 1.2. The Conference............................................................................................................. 44 1.2.1. structure and process ............................................................................................. 44 1.2.2. Outcomes ................................................................................................................ 48 2. Evaluation of this PTA.................................................................................................... 51 2.1. A public debate that was enhanced but not channeled by the Conference ................... 51 2.1.1. Impacts through the media ..................................................................................... 51 2.1.2. The public debate during and into the PTA ........................................................... 53 2.1.3. No impacts on the trajectory of the controversy .................................................... 56 2.2. Possible contribution of this PTA to a new expertise network..................................... 62 2.2.1. strong resistance of a socio-political pole ............................................................. 63 2.2.2. towards new strategizings of GMOs issue : the conference as a stage in a long process............................................................................................................................... 64 3. Conclusion ........................................................................................................................ 68 Bibliography............................................................................................................................ 71

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CHAPTER 4 - GENETIC TESTING FRENCH CASE...................................................... 73 Céline Varnier, Gérald Assouline, Pierre-Benoit Joly Introduction ............................................................................................................................ 73 1. Rationale........................................................................................................................... 74 2. Methodology..................................................................................................................... 75 3. Context and background ................................................................................................ 76 3.1. Legal and institutional framework................................................................................ 76 3.1.1. First stage : 1989- 1994 : preparation and vote of bioethics laws ........................ 76 3.1.2. Second stage : 1994- 2000 : preparation of the review of bioethics laws and delays in the application of decrees .................................................................................. 77 3.2. The European Context ................................................................................................. 78 3.2.1. The European texts and convention ....................................................................... 78 3.2.2. The surveys and eurobarometer ............................................................................. 79 3.3. Role of economic agents and State for the assessment of genetic testing .................... 80 3.3.1. The economic and industrial agents....................................................................... 80 3.3.2. The state ................................................................................................................. 80 4. Chains of translation ....................................................................................................... 81 4.1. The public debate.......................................................................................................... 82 4.1.1. Arenas and forums for debates : a limited public debate about genetic testing .... 82 4.1.2. Two short overflowing of the debate in the last years............................................ 86 4.1.3. Reasons for a weak overflowing............................................................................. 87 4.2. Stakes and risks of genetic tests: shall this technical choice predetermine social choices?................................................................................................................................. 93 4.2.1. The myths of genetics ............................................................................................. 93 4.2.2. Framing of a health tool......................................................................................... 95 4.2.3. Career of a health tool ........................................................................................... 97 4.2.4. The role of GEL in the mobilisation in progress.................................................. 100 5. Analysis........................................................................................................................... 103 5.1. -The role of the public ................................................................................................ 103 5.2. A PTA about genetic testing : benefits and limits ..................................................... 104 Conclusion and lessons to be learnT ................................................................................... 106 Bibliography.......................................................................................................................... 108 Revues .................................................................................................................................... 108 Sites .................................................................................................................................... 109 Glossary ................................................................................................................................. 109

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INTRODUCTION

This is the French nation report of the European research project called ADAPTA, Assessing Debate and Participatory Technology Assessment, of the FP4- Biotechnology programme (ELSA). We have been working on this project since September 1998. Six countries have been studied by national teams: Denmark, France, Germany, Portugal, The Netherlands, and the United Kingdom. In total, 17 case studies have been carried out as an empirical basis for the analysis. . As it is reflected in the French report, three fields of observation have been worked on the core issue of the project , the interactions between public debate, participatory technology assessment and policy making: urban transport (Chapter 2), genetically modified organisms in food and agriculture (Chapter 3) and genetic testing (Chapter 4). The report is introduced (Chapter 1) by a presentation of the national context focusing on the specific French socio-political system and the noticeable changes introduced by the French citizens’ conference on GMOs in food and agriculture of June 1998. Gérald Assouline and Pierre-Benoit Joly ADAPTA Coordinators.

Introdution

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CHAPTER 1 THE NATIONAL CONTEXT IN FRANCE Céline Varnier

This task is aimed at giving an overview on the national context in each State in order to allow a better reading of the two biotechnology ADAPTA cases and of the transversal analysis of the project. This document will focus on the cultural and political French tradition in a first part and will report on the main actors of public debate about biotechnology in a second part.

1. THE CULTURAL AND POLITICAL FRENCH TRADITION 1.1. What are the factors which could hinder the development of PTA experiences in France? 1.1.1. A centralised technocratic French State When assessing public debate activities in France, the centralised technocratic historical characteristic of the French State has to be taken into account. In this sense the political culture in the French democracy is rather similar to the British case. France is typically a representative (instead of participative) democratic system where the decisions are traditionally taken within the "arcades" of the technocratic system, in the culture of secrete of decision. The legitimacy of the decision is linked to the election of parliamentarians by the French electors. The vote is normally the only one way of participation of public in the upstream decision making-process. Citizens vote their representatives, who are responsible for the political decisions. The law is the expression of the general will and not of the confrontation of particular interests. The representatives of the population embody the general will. In this centralised State there is few place for public debate and the producer of the law have a central role. The centralised tradition is the more remarkable feature of the French culture. Since the beginning of the 20th century the representative State has became more democratic with the development of mass party, the election of MPs with the universal suffrage, the legalisation of the syndicate and associations and the decentralisation movement. However the democracy has extended but not deepened because the experts 's reports have progressively taken precedence over the will of the governed people. 1.1.2. Government of experts? A movement led to a kind of government of experts during the last decades : the complexity of problems and the sophistication of techniques in different areas have provoked a moving of the power from the political to the administrative area. That's to say the society, the parliament and government entrust the experts of the administrative technical office with the task of managing the public affairs. This trend is particularly confirmed in the issues about science assessment.

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The set up of the nuclear energy programme in the 70s is a good illustration of this system where public debate and political autonomy of the decision hardly finds a place. In such a system, "experts" are supposed to hold the "good knowledge" which has to be used in order to favour techno-economic progress; it is thus necessary to protect the decision system from non-scientific considerations, from non real risks (emotions, ideology, individual strategies, perceived risks…) (Callon 1998). Public decisions find their legitimacy out of the debate, in a "closed references system" (Lascoumes 1998). The politicians delegate the responsibility of decision about science framing to top-scientific committees or top ethic committees. 1.1.3. What about the technical democracy in France? What kind of relations between scientists and public can be represented in France? CALLON Michel distinguished 3 models of technical democracy, which are 3 ways to make understandable a complex reality : the various possibilities of participation of non-specialists in scientific and technical debates. 1) The first model is the model of public instruction. In this type of technical democracy the scientific, rational knowledge oppose the lay knowledge based on superstition. The scientists have to teach the public everything and can't learn anything from public. Public debate should not find a real place in the decision system, apart as a communication tool which would allow lay-citizens to better understand the science and technology evolution. The science is autonomous and source of progress, the crucial point is the relation of trust between the two entities. The mistrust arises from the illiteracy and is fought by scientists thanks to formation and information of the public that's why the model is called public instruction model. The political decision is based on universal omniscient scientific knowledge and representativeness of people elected by the public. This model leads to a government of experts and can allow understanding the in the 70s policies of nuclear development. 2) The second model is the model of public debate. This model analyses more fruitful relations between scientists and profane people. The scientific knowledge is universal as in the first model but non-complete. The profane people have an ability of sociological analysis, which completes the uncertainty of science. This model reveals conflicts amongst scientists and the necessity to organise enquiries, public hearings and focus groups in order to create a dialogue, to understand the collective representation of the problems. In the consensus conferences for example, is mobilised the ability of profane people to appreciate the political, cultural and ethic stakes of some scientific researches, in order to frame them. This model shows that, what is feared by the public is the risk that a handful of people decide on behalf of all the others, what is good for them. This risk is avoided thanks to the free expression and confrontation of arguments and views. The legitimacy of the political decision is linked to this open debate. But the question of representativeness in this model arises a problem. Who should or not participate in the debate? 3) The third model, is the model of "co-production of knowledge". In the first and second models, profane people are not able to produce scientific knowledge. In the third model the dynamic of knowledge production is the result of a tension between the production of knowledge at general scope and the production of knowledge linked to the complexity of local singular situations as the situation of patients associations. They want to affirm their Chapter 1 – The national context

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specific existence and engage in an accumulation of scientific knowledge: organisation of DNA collection, realisation of films and photos in order to follow the evolution of a disease, collect of evidence … This leads to a co-ordination between specialists and patients. The viability of this model is based on the conciliation between the recognition of minorities, of whom the identity depends on the produced knowledge and the creation of a common good, which has not to be absorbed by particular interests. Each of these models can be mobilised in order to describe a reality. There is no superior or better model. The organisation, production of knowledge on environmental questions, or on questions of health or food safety, could fit the models 2 or 3 and the hybrid forums that they create. These questions raise indeed the problem of an active contribution of profane people to enrichment, completion, re-launching of the scientific knowledge produced in laboratory. At the beginning of the conflict, in the case of GMOs, politicians and scientists were convinced of the necessity to inform the public in order to fight against the irrational fears about the development of GMOs. The model 1 interprets crisis by the lost of confidence in scientists, experts and politicians. This probably happened in the GMOs controversy and led to the organisation of a citizens conference, which was an attempt of framing the public debate. But the lack of re-appropriation of the conference by the government and parliament and the predetermined and ambiguous objectives have prevented any transformation in the nature of the public general debate. As if the organisation of the conference was in the scope of the second model reading and the objectives and framing of this event in the first one. Concerning the genetic testing case, we can remark that the patients associations and scientists are used to co-ordinate their activities in order to promote the development of diagnosis tests : we can read their collaboration with the model 3. Their collaboration is perhaps a possible explanation of a lack of mobilisation from associations on the social and ethic impacts of genetic testing in France. Firstly we can suppose that a public debate would need first a mobilisation, that associations are not ready to assume And secondly a mobilisation and the organisation of a public debate as a PTA could provoke a rupture of their collaboration with the scientific community. So the representation that people have of the place of profane people in the production of knowledge is not homogenous but variable and is important for the comprehension of PTAs contexts and of its impacts on general public debate going on. 1.2. A rupture in the culture of the secrete decision : towards more information / participation for the public? 1.2.1. More information to the public An experimentation process has been initiated in France in the recent years: to test forms of public information and institutionalised forums. In 1988 a report of the "Conseil Economique et Social", Economic and Social Advising, recommended a more equilibrate repartition between the roles of experts, citizens and elected people. Since this observation some efforts have been made in order to bring closer the citizens to the decision making process. The objectives, forms and actors involved are quite different. But apart from this exercise, a Chapter 1 – The national context

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multiple process is engaged illustrating the diversity of interactions between publicly expressed opposition to public decisions and public information or participation: In relation with public infrastructure conflicts, at local level, we can observe a different way of producing information for the public, with a concern from policy makers of better understanding of the information; simultaneously, the information aiming to communicate and make accept a decision is moving towards information which intend to anticipate questions on risks. The information is available if the citizen look for it but is not systematically disseminated. In the last five years, mainly also at local level, a new information policy is being implemented; the law on air contamination in urban areas obliges public authorities to diffuse information on the level of contamination and of health risk. In this case, the credibility of the diffused information is still a problem and is tackled as a topic of public debate by environmental associations. A third form is revealed by the multiplication of deliberative forums at local level, mainly created before the implementation of public infrastructures, or new planning projects. The focus is essentially consultative. In those local committees of information, (CLI)1, a diversity of actors intervenes and may participate to the definition of accompanying or compensating measures. The efficiency of such devices depends mainly on the level of mobilisation of some actors being in and out the procedure; the real influence of those local consultative committees is quite fuzzy, not defined legally and is directly determined by the capacity of its actors to invest in the procedure. This capacity is quite unequal, in terms of access to ability to mobilise expertise and access to legal procedures. 1.2.2. Towards attempts of participatory technology Assessment? The cases observed by the ADAPTA project. -Factors influencing the role of public debate and PTA Various sectoral experiences have played a key role in the experimentation of new procedures of public debate and pTA in France. They participate in the definition of new ways of communication and debate, but also on new standards of information access. Participative approaches have been used in the following areas: Nuclear wastes: Controversies on the "long life" nuclear wastes have lead to a moratorium and an experimental process of exploration of wider options for the very long-term management of such wastes. In such a new procedure, opened by the "Loi Bataille" (1991) the role of public information and public debate has been instrumental. Transports and others large public infrastructural projects. Local disposals for industrial wastes management. Use of genetically modified organisms in agriculture and food.

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P. Lascoumes, 1997: Information, consultation, experimentation: activities and organisational forms in hybrid forums. Seminar Collective Risks, crisis situations, complexity and responsability. Paris, 12th of June 1997.

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Patient groups (French Myopathy Association). Taking into account the findings based on desk research activities carried out in task 1 of the ADAPTA project, the following variables/factors appear to influence the role of public debate and pTA as well as the interrelationship between them: Nature of public debate (e. g. local, regional, national, which procedures are used), Type of actors/institutions involved, Understanding of "participation" in society (e. g. notion of citizenship, role of expert expertise in TA), Kind of perspective of pTA (e. g. strategic character of activities or diffuse distribution), Intellectual tradition underlying public debate and pTA, Type of pTA institutions, Does conflict take precedence over participation? Interacting with this initiation of PTAs and diffusion of information, a systematic opposition to public authority decisions has grown in the recent years. The public expression of dissent and resistance to authority decisions occur in various forms and are part of the political discussion on many topics in France: nuclear power policy or site implementation, nuclear waste potential health effects in The Hague, infrastructure projects of motorways, high speed train projects, dioxine contamination impacts of waste incinerators, GMOs commercialisation and cultivation. Such expression of public opposition to political decisions was supported by the emergence of NGO acting in the field of environmental and consumer issues and have stimulated the building of new expertise (e. g. well-informed citizens, scientists committed with NGOs). Some scandals about mad cow, blood, contributed to a more suspicious behaviour of public, towards governants and scientists. These factors explain the vague of call for more transparency in the decision making process and for the application of the prinzipien of precaution in the policy of science framing. This call emerging from NGOs principally but from some scientists and politicians too, found its apogee in the GMOs controversy. The most important element is that a process has been engaged towards implementation of elements of participatory technology assessment. It is still an emerging phenomenon: there is not already strategic thinking and elaboration on public participation in the decision-making process; it is still a case-by-case reaction in France. The most important media coverage od an experiment of public institutionalised participation on technology policy has been the June 1998 citizen conference on GMOs. The government took the conference for a way to overcome a blocked situation. The consensus conference was organised in a context characterised by a long standing conflict on key politic decision about GMOs. This event tended to the legitimisation of decisions through the consultation of lay people. In the genetic tests case studied by ADAPTA project no French national PTA has been organised. Traditionally in the healthy field the public debate has always been stopped in the frontier of the physician's competencies. The professionals of the Health car system have Chapter 1 – The national context

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taken the public opinion for a resource, that they could use against the decision- makers in order to reinforce their project. 2 The citizens have rarely participated in debates, which have determined the decisions in Health policies until few years ago. The "Etats Généraux de la Santé" General States for Public Health tend to be the exception in this framework. This annual event, which aimed indeed at thinking about the future of our Health system, gathers in several parts of France professionals, patients, politicians and citizens and is based on local forums, conferences (…) about different public Health topics. They are the first national experience of public debate about Health system organised by professionals and decisionmakers, which includes the public. Other experiences of public debates between the public and the professionals are more localised. The discussions between professionals and patients' associations are more common, principally when the association is well structured, when it can participate in the financing of researches and when it contributes to the growing of knowledge about the disease. In the GMOs and Transport cases it seems that in a highly administrative-legalistic context, controversy-conflict appears to have been a pre-condition for the opening-up of policy deliberation to wider participation. The combined effect of the counter assessment of the motorway project in the Nice agglomeration in one case and of the GMOs in the other case with the freezing or turnaround of a decision made it possible to open a public space to debate on these issues (the development of Cote d'Azur and the stakes and risks of GMOs). It made it possible to re-open the field of possibilities. This combined effect did not happen for the genetic testing. The conflict seems in France to take precedence over participation, but the mobilisation can create the conditions of participation.

2. ACTORS INVOLVED IN PUBLIC DEBATE ABOUT BIOTECHNOLOGY 2.1. Actors involved in public debate from specialised arenas 2.1.1. The political actors European conventions, texts , rules and institutions In the PTA and public debate processes a major factor is the European framework decided by European actors. The legally binding texts and "directives" have an impact on the national key decisions about technology assessment and on the strategies of actors. However it does not pre-determine the end of a controversy, it is a factor amongst others, that the actors use in their argumentation and mobilisation. The Oviedo Convention3 is for example the first legally-binding international text designed to preserve human dignity, rights and freedoms, through a series of principles and prohibitions against the misuse of biological and medical

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Jobert B, "représentations sociales, controverses et débats dans la conduite des politiques publiques", in Revue Française de Science Politique, n°2, 1992

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The Oviedo Convention signed in 1997 is the Convention for the protection of Human Rights and dignity of the human being with regard to the application of biology and medicine.

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advances. The French government has many times declared that the Parliament would ratify it but this ratification is not in the official parliamentary agenda yet. In the GMOs case we saw that the CGB was elaborating the evaluation's rules for risks of GMOs, in application of the European Directive about the dissemination of transgenic plants in environment (Directive 90.220), when the controversy started. The government The ministries of Health, Agriculture, Environment, Economy and the Prime Minister are sometimes divided on questions in Science, as the GMOs case showed it because these entities do not support the same stakes. This division can contribute to amplify a debate and potential controversy. The government interferes in the regulation of technology made by experts and scientific community when it becomes politically necessary. The controversial stand of parliamentarians The large majority of members of the Parliament (apart JY Le Déaut) did not attend the Citizens Conference about GMOs. Different complementary grounds can justify this absence of parliamentarians: -

Firstly the issues in science are more and more technical and complex and the MPs delegate these issues to a handful of MPs, who are professionally engaged in science or medical area and who are members of parliamentary commissions working on these questions and to experts committees, which are the adviser of the Prince (the State). An example of this delegation is the law about bioethic, which was voted in 1994 by the MPs but had been prepared by the OPECST, the committees of ethic, the committees of medical top professionals…

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Secondly this PTA was organised after the government had taken a key decision on the topic of GMOs assessment and some MPs took this event for a political manipulation.

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Thirdly we can suppose that the MPS do not know how this PTA can be inserted in our political regime and fear a kind of competition between the consensus conference and the parliamentary chambers. Their conception of a citizen is often the following : a citizen is a person, who votes. It's as if the election was the only one moment of participation for the lay-people in the decision making process.

In the genetic testing case the parliament voted the bioethics laws in 1994, which frame the use of genetic testing. 2.1.2. The advice committees The Office Parlementaire d'Evaluation des Choix Scientifiques et Technologiques The (OPECST) was created in 1983 on the model of the US Office of Technology Assessment (OTA), in order to provide the Parliament with its own capacity of expertise on scientific and technological developments. Its aim is "to inform Parliament of scientific and technological options in order, specifically to make its decisions clear". Regarding this, OPECST "collects information, launches study programmes and carries out assessment." Chapter 1 – The national context

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Its members who are nominated in order to guarantee a proportional representation of political groups belong both to the National Assembly and to the Senate. It is composed of : The "members" of the Office, (eight deputies and eight senators) and An administrative team of three permanent civil servants. The main task of OPECST is to produce reports requested by one of the Chamber of the Parliament (Chamber of MPs or Senate). Such reports are taken in charge by a member of the Office, who is helped by the technical support team and generally by external experts. The report is then presented to the members of the Office, who generally adopt and publish it. Until now the topics dealt with have belong to four main subjects: energy, environment, new technologies and sciences of life. The OPECST is not a place recognised for stimulating public debate. However, it plays a key pre-legislative role: e. g. the premises of the "Loi Bataille" on nuclear wastes (1991) have first been discussed at the Office; the parliamentary debate on the control of release of GMO's for the adoption of the 92 Law where preceded by a report of the OPECST. The OPECST gave its view about the future review of the bioethic laws. The review of 1994 bioethics laws is supposed indeed to be partly grounded on the study carried out by J.-Y. Le DEAUT. This analysis had a preparatory goal. Since the early 90s, the Office has gradually adapted its methods. It has organised several public hearings on complex issues like the status of the Antartic or a hybrid nuclear reactor. OPECST acts as an intermediary between the political world and the world of research. It has to listen to the researchers and request authorised opinions. The organisation of the "Conference de Citoyens" on the use of genetically modified organisms in the Agro-Food sector was the first occasion for lay-citizens to enter into the evaluation procedures. It is too early to say which will be the impact of this first experience on the modes of works of the OPECST, but the first feeling of the actors of the Office is rather positive. The Commission Nationale du débat public (CNDP) It was created by law in 1995 in order to organise the public debate on big public infrastructure projects (Blanc 1998). It was preceded by the "Circulaire Bianco" of 1993, which already defined the procedure of the public debate while designing such projects. The CNDP may be requested either by Ministries, by the Parliament or by NGOs (not compulsory in this later case). On each peculiar project, the CNDP designs a specific Commission composed of seven members, chaired by one of the members of the CNDP. In these commissions representatives of interest groups may be included. This commission is in charge of the organisation of the debates of a specific project which are limited in time. Since the establishment of CNDP various projects have been instructed by this procedure like "Port 2000" at Le Havre, autoroute A32 between Metz and Nancy, the EDF project of high energy transport between Boutre and Carros (within the Parc Régional of Verdon). The "Comité national consultatif d'Ethic " This National Consultative Committee for Ethics (CCNE), which is a consultative body, has been important in the preparation process of bioethics laws in July 1994, relating e. g. to the donation and utilisation of elements and products of the human body, medically assisted procreation and prenatal diagnostics and the treatment of nominative data for the purpose of Chapter 1 – The national context

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research in the medical area (Coulanges 1996). The CCNE is an independent structure but linked with the Health and Research Ministry. ♦ Within the CCNE the relation between the committee and the French parliament are discussed. Since CCNE has no elected members, they are nominated by personalities of the political system (especially the President of the Republic) because they in partly belong to important philosophical and spiritual obediences. CCNE is composed indeed of scientists, persons drawn from the principal philosophies and religious faiths, people chosen because of their qualifications, competence and their interest in ethical issues. In addition, CCNE has no legal power, it is only a consultative body which in the view of some of its members is the guaranty for its independence. Each issue is studied by a working group, which has the opportunity to refer to external experts. Then the preliminary investigations are made by a technical section -12 members nominated on proposal of the president: they judge the relevance of the cases and decide whether or not it will be examined by the Committee ♦ If the consent is given, a report is written enclosed with recommendations and some advice ♦ The spreading of the works is made through: an annual public conference, press conferences and a quarterly review Concerning bioethical issues, the Committee has delivered many recommendations and advice since its creation because it is its rationale. It has also commented on the report written by the OPCEST about the bioethics laws of 1994 This very important structure is supposed to carry out "objective" thinking and is currently taken as a reference by the other actors. ♦ Anyway in case of conflicts between two actors it plays a role of an adjudicator and its judgement is taken for granted. The example of the controversy about researches of INRS4 on genetic testing at work between the INRS and the workers syndicates is a good example of the moral authority of this institution in France. The conflict calmed down after the CCNE had given a positive view about the usefulness of these researches, which were strongly contested by the workers trade-unions. ♦ The Committee may be requested about an issue either by the Presidents of Parliamentarian Assemblies, the members of the Government, the public establishments or the associations of public utility. It is an intermediary structure between the public opinion (through associations of all kind, ….) and the political authorities (mainly the Parliament which is always informed about the decisions taken by the Committee) It could be seen as a means to express lay opinions in a formal way. Theoretically it could play a great role on the emergence and structuring of debates by facilitating the broad

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The INRS is the National Institute of Research and Security for Prevention of Working Accident and Professional Diseases

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spreading of the information and by encouraging PTA. But most of the members (even if recognised for their competencies) are mainly experts in their matter and citizen are not represented. The relations with the other institutions are mainly procedural: there is no spontaneous interaction with other entities concerned by the use of genetic testing for example. However it has the opportunity to directly intervene in a debate in a mediatory goal. At best its recommendations can be integrated in the new laws, but as it has a consultative status nothing is for certain. The major statement is that before 1994 the CCNE was aimed at promoting the public debate and giving its view about ethic problems raised by the technological progresses, but since the vote of the bioethic laws in 1994, which re-affirm its mission, the CCNE has been aimed at making recommendations to the government and the parliament about the science framing as regards ethic aspects. Its function of promoting the public debate is less underlined. 2.2. Space of mobilisation 2.2.1. The NGOs and associations : core of a mobilisation process… NGOs could be influential on pTA activities in France in putting a high pressure on the political decision-making system, as they did it in the GMOs controversy. The tradition mixing state control and centralisation was in the beginning one fight from State against all types of organisations raised from the civil society: fight against the regions and the religious minorities during the Ancien Regime, fight against the corporations during the French Revolution, fight against the workers movement during the 19th Century because nothing should interfere the link between the State-and the people.5 But in 1901 a law organised the liberty of association, and the associations developed principally in 1970s thanks to the Welfare state and in 1980s thanks to the socialist government and the decentralisation process. Nowadays the associations are sometimes presented as vectors of public policies. They are not lobbies like in USA but partners in the social innovation and sometimes in the policies of medical research on the genetic diseases for example. The environmental associations (FNE, Ecoropa..), the agricultural trade unions (Confederation Paysanne) and the consumers associations (UFC) have a central role in the GMOS controversy and try to make their stakes predominant on the public scene. In the genetic testing case, there are less NGOs involved in a mobilisation because the genetic testing do not hit completely the strategy of these NGOs. On the contrary the genetic testing in specific areas like medical applications is supported by associations like patients 'associations (AFM, association of Huntington patients…). These associations of patients, who engage more and more in the Health area in order to support the families, to finance the researches on rare diseases and to find solution to daily questions raised by the disease are a kind of associative counter power because these financial investments, these solutions are usually constructed by confrontation with the administrative, medical and political institutions. In the genetic testing some associations claim a right of access to the diagnosis, which is not always at the patients ' disposal. But in the same time as they support the application of this Health tool the associations have to avoid the risk of social discrimination

5

Archambault Edith, "Le secteur sans but lucratif" Economica,1996

Chapter 1 – The national context

11

linked to the application of genetic testing in social area. This situation leads to a prudent stand of patients association referring to genetic testing development and debate. In addition NGOs are progressively recognised as an independent form of expertise (e. g. the CRIRAD in the field of nuclear energy) and various expertise or regulatory committees now use to include members who represent NGOs (for genetically modified organisms, this is the case both for Comission de Génie Biomoléculaire and Comité de Biovigilance). 2.2.2. ….or a tool of a bio-power"bio-pouvoir" The associations are not always represented as potential motor of a mobilisation on general cause. In the environmental area LASCOUMES described the "Biopouvoir" as following: The State gave the associations of environment the possibility to participate in the regulation policies of local environmental problems. This collaboration is qualified in the view of LASCOUMES as a hindrance to their ability of counter- expertise face to technician functionaries, who are the real authors of norms and rules in this field. What motivates the association of environmental protection? They try to participate in the making-decisions process (since the decentralisation), to discuss the criteria of environmental planning, and to control the respect of procedures on local and limited debates. These "missions" are made without concrete and important means. The political institutions have institutionalised some interlocutors amongst associations, that gives a credibility to the local decisions, which are taken in facts by the scientific experts, which are in the highest sections of the French administration. So the ability of mobilisation from these associations is very limited : they participate in the process of decision, they claim for more scientific progress in order to reduce the uncertainty, they have promoted the development of public enquiries, in which the views of experts win always outweigh the democratic confrontation of interests, they are unable to mobilise on a global stake and are not able to take other associative networks on as partners (like consumers associations ) because their internal divides take up too much of their energy. Only exceptional cases or periods of electoral fragility lead to a public discussion about initial expertise of technical administrative offices. Did Gmos controversy lead to a rupture in this representation of an eco-power? It is probably one of this exceptional case because the associations have mobilised on a general cause and have developed collaboration with consumers' associations and farmers trade unions, based on the open protest again the public decision and technical evaluation of specialist experts. 2.2.3. The media In the view of LASCOUMES, the representation media have from the environmental problems are rough in comparison with the complexity of the stakes. Very often the environment is taken by media for Nature. The technico-economical dimension is minor in the media reports. That is an obstacle to a democratic debate. What about media in GMOs controversy?

Chapter 1 – The national context

12

In the GMOS controversy the media are very active on the public scene. They are the relay of a mobilisation, they can be an actor and draw the attention on some implications of science for the society, they are often the intermediaries between the public opinion, the stakeholders, the professionals and the technique. The media, and more precisely the press, have largely relayed the citizens' conference and a journalist of Le Monde thinks it was the occasion for the media to speak of the controversy in a more citizen way. They have approached the problem of GMOs in a more broader way than the other environmental problems. But Media were very suspicious as regards to this PTA because of the risk of political demagogy they found in this exercise. In France media report on an issue if there is a mobilisation or a controversy, they do not think possible to launch a debate, which would anticipate a problem or a stake. 2.2.4. The scientific community It is another actor, but not homogenous. The existence of a scientific controversy about the technology or product is determining in the growing of debates and tensions. In the GMOs case the conflict about the risks linked to genetically modified food between most molecular biologists and scientists, principally coming from other specialities, has nourished the controversy and the debates. The membership of some scientists to environmental NGOs has contributed to broaden the circle of mobilisation too. And the PTA contributed to clarify the conflict and the different arguments. Since some conflicts or scandals (mad cows, the blood) there are more and more efforts of scientists in favour of a best information to the citizens. But the PTA, where the citizens directly challenge the experts and scientists to explain their researches and stands is a non-common exercise for this community. 2.3. The industrial /financial/economical actors in reaction of the mobilisation The economical stakes are very important in the issues of technology assessment. The seeds producers Novartis or Monsantos and the pharmaceutical-biotechnological firms have invested a lot of money in the development of GMOs food, of genetic diagnosis or genetic therapy. They are an industrial lobby very strong in favour of the biotechnological progresses and commercial applications. 2.3.1. Industrial actors in GMOs case In the case of GMOs the industrial firms were in the core of the controversy and were accused to pillage the agricultural world, to pollute the environment, and to make the population run a potential risked with food without having informed people about the exact level of risk. The agro-food firms like Novartis, Monsanto, have tried to support the GMOs by different communication campaigns. Novartis took part to the PTA. The supermarkets (like carrefour) and retailers have been more suspicious to the GMOs development. After the PTA Carrefour became the allies of consumers associations, the INRA (National Institute for agronomy research) and the FNSEA, the first farmer trade union in France, for a reflection about the setting up of a non –GMOs food chain.

Chapter 1 – The national context

13

2.3.2. Industrial actors in genetic testing case In the genetic testing case it appears that only the insurance firms are subjected to critics and attention. People fear an application of this Health tool in the social area for the selection of risks needing to be insured but seem not so worry about the potential misuse of this technique in the scientific and medical area. The firms, which produce these tests, have a weak public visibility, firstly because there is a monopole on these products by Affymetrix (US) and they are mostly small foreign enterprises (the start-up), which try to develop other genetic tests. Secondly the organisations, which work on genetic testing in France are principally the public laboratories and till few weeks ago no decrees have been implemented the use of genetic testing by public laboratories and hospitals. Thirdly genetic testing are not in mind of people an effective and efficient tool. The problem of the relevance of such tests leads people not to be interested in impacts of this technology. Moreover the genetic testing are supported by patients associations, who claim a right to diagnosis, and this gives a kind of safety and ethic guarantee to this tool. That’s why the economical and industrial firms have not the same role in the both debates, although the economical and industrial stakes have the same importance in the GMOs and genetic testing assessment.

Chapter 1 – The national context

14

CHAPTER 2 CASE STUDY OF URBAN TRANSPORT: TERRITORIAL DIRECTIVE FOR THE DEVELOPMENT OF NICE Jacques Lolive, Pierre-Benoit Joly and Gérald Assouline

INTRODUCTION

In France, transport policies usually do not cater for the direct involvement of non institutional actors through participative processes. In the few cases where participation is observed, it is the result of strong mobilisation of local interest groups which use different ways to put the issue on the agenda and influence the decision making processes. These actors take decision-making beyond its strict technocratic framework, by reformulating problems, proposing new projects, and so on. In short, constraining factors are required for public participation to be integrated into urban transport policy-making. Yet a timid evolution is currently underway, spurred by the emergence of environmental planning and the proliferation of protest against transport projects6. The choice of the field of investigation of this paper is related to these general observations. The case study will thus be used to highlight the way through which lay people participation and public debate may interact with transport policies. We shall analyse a urban agglomeration, Nice, where strong environmental and transport stakes have allowed the emergence of a DTA (Regional Development directive), an environmental planning tool, that former opened on the participation of the associations. The Alpes-Maritimes DTA is indeed the result of a regional and local development conflict that arose around plans for a second, parallel motorway, the A8 bis. This conflict subsequently spilled over onto SDAU (Urbanisation and development plan) projects and finally raised the question of the development of the Côte d’Azur and of the choices to be made. It took nearly twenty years of controversy, reluctance and conflict before the question of a choice of urban development and planning was put to any actors other than the official ones concerned. Owing to this dialogue, a set of initiatives was taken which transformed urban transport policy : creation of PDU (Urban transport programme), projects for public transport with dedicated lanes/rails, ... This example enables us to explore relationships that were formed between a controversy, a procedure of concerted planning and decision-making processes, and thus to clarify the conditions of participatory evaluation in France.

6

The normative influence of European union must be added to these factors.

Chapter 2 – Case study of urban transport

15

1. RESULTS

We shall start by describing the process studied: mobilisation against major development projects on the Côte d’Azur (Chapter 1) led to a procedure of concerted planning, the DTA (Chapter 2) which, in turn, prompted the redefinition of urban transport policies (Chapter 3). The apparatus of participation is analysed in the following section (Part III). 1.1. Mobilisation against major projects on the Côte d’Azur7 1.1.1. Failure of the first SDAU and motorway projects in the Nice agglomeration inter-communal syndicate The deadlock in urban planning in the Nice agglomeration and that of Cannes-Grasse-Antibes goes back to the 1970s. That was when the first conflict arose around the definition of the SDAU8 of Nice. From the outset the conflict focused on Nice and was supported by councillors from the Moyen Pays (i.e. the areas slightly inland, including towns such as Vence, Saint Jeannet, Gattières, le Broc, etc.). It directly concerned the modes of control of the very different types of land ownership and occupation on the coast around Nice. The SDAU project was prepared by the inter-communal syndicate of greater Nice and proposed by local representative of state authority for equipment (the Alpes-Maritimes DDE). The issue in the Nice agglomeration SDAU was that it directly included the towns of the Moyen Pays into the project. Local players saw this as pure and simple absorption of the Moyen Pays communes9 into the Nice conurbation. They immediately declared war on the SDAU project. Even if it were approved by the state, it would not be accepted for inclusion in the local landuse regulations, the POS. Thus, very early on, a form of resistance was organised by a local community, through the drawing up of town planning documents. The SDAU projects were not included in the POS and nor were plans to add a parallel motorway to the A8 motorway, at the time called the “Voie verte” (the “Green Way”). They were shelved and brought out again only when the SDAU of the Cannes-Grasse-Antibes agglomeration was amended in order to take views of the councils of the cities of the Moyen Pays . 1.1.2 Renewal of projects in the Cannes-Grasse-Antibes agglomeration and building up of a second conflict During the 1980s amendments to the SDAU were undertaken, based on the partitioning defined in the 1970s. A new conflict broke out around the position of the A8 bis motorway (the new name given to the “Voie verte”) to the south and north of Grasse. The modalities of the conflict were different to those of the 1970s: the controversy was expressed henceforth in the west, in the Cannes-Grasse-Antibes syndicate. These cities were opposing the state (represented primarily by the Prefect and the Infrastructure Ministry). The conflict was fed by the interests of those living along the planned road since the motorway would pass through

7

In this historical chapter I draw on the analyses of A. TRICOT, L’Empire du milieu : quand les controverses environnementales interrogent la conception et la conduite d’un projet autoroutier, Geography and development thesis, Pau University, 1998.

8

Urbanisation and development plan that defines rules of land use in Nice and surroundings.

9

Interview with Mr Iacono, mayor of Vence.

Chapter 2 – Case study of urban transport

16

the commune of Grasse, in an area that was more urbanised than in the 1970s. But also,debates on the different options for local and regional development were at stake. The planned motorway did not fit in with the development projects of the communes responsible for the SDAU (urbanisation of the Saint Vallier plateau and extension of Sophia Antipolis). The western communes were therefore hostile to the motorway infrastructure because it did not correspond to development projects in the SDAU. On this point their position differed from that of the Nice agglomeration councillors who very reluctantly embarked on the amendment of their SDAU. This conflict around the position of the motorway was to be “solved” by a first expert mission (the Bourges Mission, July 1990) which recommended that the motorway be built south of Grasse, according to the expectations of the state and to the great displeasure of those communes most directly affected (Grasse, Mouans-Sartoux). 1.1.3 Associations' entry onto the scene in controversy over networks, and counterassessment Associations were to join the conflict in the 1980s. They developed an original logic for their actions, inspired directly by conflict around the Mediterranean TGV10 and based on specific relations with certain mayors in the syndicate11. Functioning on the lines of a network logic, the associative "Coordination" grouped together associations in Grasse and surrounding areas, and was connected to associations in the Moyen Pays around the Var river (Tourettes and Fayence). It also worked with councillors opposed to the project. The imbalance due to state administrations' monopoly on expertise was reduced by the know-how on transport acquired by the leaders of protest associations, through a long conflict and the presence of civil engineers from the Ponts et Chaussées in their midst. This organisation took a set of new initiatives : the freezing of SDAUs and the commissioning of a counter-assessment of the motorway project called "L'Alternative", by two independent consultancy firms, one in Italy and the other in Britain. The counter-assessment was financed by syndicate formed by several communes, called the GEFIDA (Group for investigative and financing the alternative projects). The combined effect of the counter-assessment with the freezing of the SDAU made it possible to open a public debate on the aims of development of the Côte d'Azur: either the goal was an immense conurbation from Nice to Cannes with all the attendant effects, or the organisation of development which took primarily into account territorial peculiarities, especially in the Moyen Pays. 1.1.4 Results of the mobilisation : cancellation of the Cannes-Grasse-Antibes SDAU and rejection of the motorway project To resolve this new conflict, a second expert mission was appointed by the Infrastructure Ministry in 1994. It failed to meet the expectations of local players). Closely supervised by the Ministry, it disregarded the work carried out by the counter-assessment and controversy around the SDAU. The final debriefing was boycotted by almost all the players (councillors and local associations). By reaffirming the public usefulness of a parallel motorway, the mission was meant to renew studies on the infrastructure project and on the SDAU

10

On the Mediterranean TGV (an high speed train project) controversy cf. J. LOLIVE, Les contestations du TGV Méditerranée : projet, controverse et espace public, preface B. LATOUR, Paris, L’Harmattan (coll. logiques politiques), 1999.

11

In particular M Aschieri, former head of the association coordinating opposition to the A8 bis motorway, who subsequently became mayor of Mouans-Sartoux and member of parliament for the Alpes-Maritimes, and M. Vinciguerra who is both head of the association and general-councillor for Grasse.

Chapter 2 – Case study of urban transport

17

development projects. Then, owing to serious floods in the autumn of 1994, in which the level of the Var rose exceptionally, associations were able to press for and obtain the cancellation of the Cannes-Grasse-Antibes SDAU by the Grasse administrative court. The SDAU for the neighbouring Nice agglomeration was, at the time, progressing very slowly. In November 1995 Bernard Pons, then Infrastructure Minister, mandated the Prefect of the Alpes-Maritimes region to launch preliminary studies. The state's intentions then seemed clear to local stakeholders: in an interventionist type of way it wished to impose a set of "super guidelines" with, as the key, the building of the motorway, the extension of the SophiaAntipolis industrial park and the building of a tunnel under the Mercantour. In short, this planning seemed to be a way of avoiding classical local negotiations around urban planning documents. The result was intense suspicion by local actors as regards this procedure since the freezing of the SDAUs had, until then, been a way of controlling planning incorporated in projects. After the governmental change, the procedure to declare the project in the public interest, launched by the Minister Pons for the A8 bis motorway, was suspended in August 1997 by new Ministers Gayssot and Voynet. Because "alternative proposals have been presented to the state by councillors and associations"12, the two ministers wanted debate on transport in the Alpes-Maritimes to be oriented towards a multimodal system. The DTA project, steered by the Prefect of the Alpes-Maritimes will then be instrumental in providing the procedural framework for the reorientation underway. 1.2. Planning a territory under pressure: the Alpes-Maritimes DTA Owing to the change of government in June 1997, the motorway projects were shelved in August of the same year and global reflection on transport in the Alpes-Maritimes region was initiated. In this new context, the DTA was launched in November 1997. It was demanded by the actors, especially the associations. Three types of orientation were contained in the DTA mission statement: 1) enhance the position of the Côte d'Azur in the Mediterranean; 2) control urban development; 3) preserve and add value to an exceptional environmental heritage. The DTA opened a new space for negotiation. According to the decentralised services of the Infrastructure Ministry it was a "green" tool consisting primarily of sustainable development objectives. The alliances had changed and new issues were at stake in the DTA. It upset routines since planning had hitherto been based on a logic of "adding facilities13". In this DTA the transport section was essential and an intermodal study was launched to consider all forms of travelling on all scales, from the main roads and railways passing through the area to short distances covered in urban areas. Priorities had clearly changed. As far as transport policy was concerned, the DTA recommended: 1) the improvement of existing infrastructure; 2) the study of a heavy public transport option in the Alpes-Maritimes; 3) if this did not suffice, a study of an acceptable route for an additional motorway; 4) an analysis of the usefulness of a tunnel under the Mercantour.

12

Le Monde, 2 August 1997.

13

J. P. GAUDIN, L’aménagement de la société. La production de l’espace aux XIX et XX siècles, Anthropos, Paris, 1979.

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18

1.2.1 The DTA opens a window onto participation Defined by the law of 4 February 1995 called “orientations for national planning and development” (LOADT), the DTA are planning tools to which the law assigns three specific objectives: a) in certain areas, establish the state's basic orientations concerning planning and development and a balance between the prospects of development, protection and improvement of territories; b) establish the state's main objectives concerning the location of major transport infrastructure and facilities, and concerning the conservation of natural spaces, sites and landscapes"; c) specify, where relevant, for the territories concerned, the modalities of application of development and urbanisation laws (including the Coastal Protection Act and the Mountain Act) adapted to local geographical peculiarities. The POS and SDAU must be compatible with the DTA. The areas concerned by the DTA are "territories under pressure"14 in which the need to protect the natural environment meets the need to plan transport infrastructure, and where these two needs confront a use of space that is still not under control. The DTA can be interpreted as a state’s attempt to plan precisely in those places where the processes underway seem to have failed. It is certainly no coincidence that the agglomerations of Nice and Cannes-Grasse-Antibes are experimental areas. The DTA are drawn up under the responsibility of the state and at its initiative, following a decentralised procedure in which the local and regional communities concerned are grouped together: the regions, departments (counties), communes with administrative authority in the department, and communes with over 20,000 inhabitants, as well as groups of communes competent in the domain of territorial development and urban planning. Thus, the dialogue provided for by the law concerns some councillors only. It excludes small and medium-sized communes, socio-professional representatives and associations. The change of government in 1997 amended that. The first preliminary research phase for the Alpes-Maritimes DTA was completed and the prefect received a letter dated 12 November 1997 with the mission to launch the second phase. This letter, signed by the Infrastructure and the National Development Ministers, proposed the broadening of consultation: "Apart from this legal partnership (with the communities concerned) you are urged to broaden the dialogue and to gather the opinions of those players who represent the people concerned and who make proposals in the areas of local and regional development, economic and social development and the environment". The Prefect was thus obliged to open the DTA steering committee to the main socio-professional organisations concerned, particularly the chambers of commerce, industry and agriculture, and the economic and social council, and to the various associations, from nature conservationists to users of public transport. These new partners were also included in the main studies intended to define the orientations of the DTA (intermodal study of transport, study of the Var valley, etc.) and were invited to sit on the relevant steering committees. Let us take, for example, the intermodal study of transport. It was clearly a key issue for the assocations.. The transport section of the DTA aims at establishing coherence between the transport systems. This coherence should be defined in a multimodal approach (road, rail, air and sea) and favour those modes which most efficiently meet the objectives of sustainable

14

P. MISCOPEIN, “ La loi Pasqua. Les Directives territoriales d’aménagement ”, Etudes foncières, n° 66, March 1995, p.912.

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19

development. Thus, the general intermodal study covers all forms of travelling, on different scales, from major roads and railways through the territory to short urban distances. It aims at examining all forms of alternative solution to the planned A58 motorway15, and proposing measures favouring alternative modes of transport on the most saturated links. It is supposed to offer a solution to two concerns: a) the satisfactory articulation between the evolution of urbanisation and the transport supply and b) the organisation of urban transport with a view to reducing use of private vehicles and developing public transport, in keeping with the objectives of the law on air pollution and their translation in the PDU. How does consultation take place in the steering committee ? This committee has 36 ex officio members: 6 state representatives, 18 senior elected representatives, 6 representatives of associations and 6 businesses and socio-professional organizations16. The chairman of the steering committee is the Prefect or her/his representative, the Director of Infrastructure for the department or her/his deputy. At first glance, the 6 representatives of associations carry little weight compared to the councillors, who have a quasi-majority, or the state representatives, particularly the infrastructure administration which has the responsibility for steering, financing and presiding. However, the meetings themselves17 provide a different picture18. All of them confirmed this active participation by the associations. As one of the participants, a regional state official, commented: "On the intermodal study there are virtually no councillors, only associations: it's they who voice their opinions while the councillors remain silent". We’ll explain in the Part III how, within the steering committees, the participation of associations can influence the decision-making although the associations are in a minority. 1.2.2 The associations in the DTA Which associations participate in the DTA ? The main ones are the Alpes-Maritimes Coordination for an intermodal transport system and the national federation of transport users' associations (FNAUT). Secondly, there are two components of the associative movement: federated environmental protection associations and users' associations. Coordination of the Alpes-Maritimes for an intermodal transport system The coordination against the A8bis, which grouped together associations of people living close to the future motorway, subsequently became the Alpes-Maritimes Coordination for an intermodal transport system. Its members included the Association for the protection of the

15

A58 would be the new name forA8b.

16

The committee consists of 6 state representatives (1 CGPC, 1 DR, 1 DTT, a member of the Nature and Landscape Department, the Regional Director for the Environment, the Departmental Director of Infrastructure); the President of the Regional Council, the President of the General Council, the 3 Presidents of the Intercommunal Syndicates (responsible for drawing up the SDAUs); 12 senior elected representatives (members of parliament, senators, mayors of large towns); 1 elected President of the Alpes-Maritimes Transport Agency; 6 representatives of associations; 6 organisations (Chairpersons of the 3 chambers of commerce, industry and agriculture, the Chairperson of the PACA region Economic and Social Council, the Regional Manager of the SNCF, 1 representative of Réseau Ferré de France).

17

Eight steering committee meetings were held between February 1998 and May 1999. I was present at two of them (10 July 1998 and 26 April 1999) and was able to obtain the minutes of all eight meetings.

18

For example, in the 12 February 1999 meeting the associations and their supporters were represented by 14 of the 41 participants : ten representatives of associations + one councillor, former head of an association (Aschieri) + 1 assistant from the Chamber of Agriculture (engaged in the fight against infrastructure projects) + one GEFIDA councillor (an association of councillors opposed to the A58). They were particularly active in the debates and 21 out of a total of 24 interventions in the sitting were by them.

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20

RN 202bis, composed of farmers threatened by the latter project. This federation of associations helped to promote the increasing generalisation of the movement19. Wanting to legitimate their action, these associations based their arguments on principles that were general (and generous) enough to transcend the singularity and self-interest of initial demands, and inscribed them in a collective cause. The Coordination thus evolved from an essentially reactive20 opposition, consisting primarily of people living close to the future road, to a mobilisation for the harmonious development of the Moyen Pays. These associations feared that the planned infrastructure would result in a rapid growth of urbanisation in the Moyen Pays – something that local inhabitants did not wish to see. According to them, this spread of urbanisation from the coast towards the Moyen Pays communes threatened the quality of their environment and hence the development of tourism and of high-tech enterprise in these communes. This generalisation of interests defended by the association was confirmed by two trials: •

the ballot box, firstly, because two leaders of the Coordination were elected, one as a member of parliament and the other as General Councillor;

•

expertise, secondly, since some of the associations' criticism of the A8b was confirmed by other members of the steering committee, and the associations' counter-proposals were evaluated by the consultancy firms.

During the struggle against the A8bis, this orientation caused the Coordination to move closer to the Moyen Pays councillors' association, GEFIDA (group for investigating and financing the alternative projects), with a view to establishing alternative proposals to the A8bis. What proposals did the Coordination and GEFIDA21 make in steering committee meetings ? The general transport plan proposed in 1996 with the councillors briefly referred to measures to promote public transport22. But most of the proposals (three out of four sections and most of the pages) were on road transport: improvement of the existing road network with a detailed description of the "black spots" (predictable traffic jams) and improvements to be made.23 Examination of the April 1998 document, Les "Points rouges" à aménager pour améliorer la circulation ("Black spots to be developed for improving the traffic flow") confirmed this impression of an imbalance, for it contained two lines on public transport as opposed to three pages on road transport.

19

The increasing generalisation (montée en généralité) is defined by sociologists of justification as "the capacity to link up particular things and general entities (which) characterise the legitimate tools for justification forged by political communities". Cf., for example, C. LAFAYE and L. THEVENOT, "Une justification écologique ? (Conflits dans l'aménagement de la nature)", Revue française de sociologie, n° XXXIV-4, October-December 1993, p.501.

20

We qualify this initial phase of opposition as reactive because the associations base their reactions to it on the predictable impact of the motorway.

21

Cf. le dossier commun Pour une stratégie des transports. Proposition du Gefida : Association d’Élus du Moyen Pays , février 1996. qui reprend en les précisant une partie des propositions de l’Alternative et le dossier associatif plus récent Les “ Points rouges ” à aménager pour améliorer la circulation, Coordination des Alpes Maritimes pour un schéma intermodal des transports, Région Verte, Association de défense des 7 communes contre le projet A8bis, avril 1998.

22

Creation of a third track on the SNCF Mandelieu-Vintimille coastal line; modernisation of the Chemins de fer de Provence (CP) line; re-opening of the SNCF Cannes-Grasse line; creation of a line between Biot and Sophia-Antipolis and transport in Nice with dedicated lanes/rails (TCSP).

23

Proposals to improve the RN204, RN85, RD2085 and RD2562; creation of an underground road under the RN98 from Antibes to Nice for fast traffic; improvement of the A8 motorway (extension to 2x3 lanes) by-passing Nice on the north; improvement of the RN 202; creation of an entirely underground road diagonal to the A8 (Biot-Saint Isidore).

Chapter 2 – Case study of urban transport

21

Thus – apart from the specific case of the Association to protect the RN 202bis24 – the entire Coordination and its councillor allies represented peri-urban inhabitants of the Moyen Pays, all big users of private vehicles. They were opposed to any new road infrastructure in the Moyen Pays for the reasons stated above. But at the same time they were familiar with traffic problems on the coast and wanted them solved rapidly, if necessary by means of new infrastructure. On the other hand, they were less familiar with inter-urban public transport and showed little interest in urban public transport, a subject of particular interest to their allies in the FNAUT. The FNAUT The FNAUT and its specialised associations such as the Groupe d'Etude pour les Chemins de fer de Provence, put together very detailed files on the state of the department's railway lines.25 The diagnosis and detailed proposals26 were established with several engineers and technicians, specialists on railways, but also drew on the experience of public transport users. One of the FNAUT's regional leaders is a television journalist, which is why the FNAUT in the PACA region has been trying for the past few years to give its actions and proposals on the renewal of railways as much media coverage as possible in regional TV and national programmes27. The FNAUT also denounced factors of opposition to change in French transport policy: the total lack of coordination of public transport; the technocratic management of the SNCF; the additional remuneration of Ponts et Chaussées engineers who push projects to build the most expensive roads, etc. As a registered federation, the FNAUT is involved in most dialogue with the administration, including the DTA. We note the complementarity between associations opposed to the A58 and the FNAUT. The former carry out a watch, intended to prevent the construction of any further major road (meaning motorway) infrastructure, especially in the Moyen Pays. They make proposals for the improvement of coastal road infrastructure. The latter (and some members of the transport services of local and regional communities: large towns, the General Council and the new Regional Council) benefit from the fighting spirit and vigilance of the former to put forward their public transport proposals. 1.3

Consecutive reframing of urban transport policy

Owing to the conflict and this consultation, a set of initiatives is being taken in the field of urban transport. 1.3.1 Factors of change New procedures such as the PDU do certainly afford an opportunity for redefining urban transport policy in the Nice metropolitan area, but they are insufficient. Other factors explain change in these urban policies.

24

The part of the conflict on A202b which was projected to be a north-south axis in the Var Valley is an important part of the overall debate. However, we will not develop it in this paper, in order to keep the story simple.

25

Nice-Breil, Cannes-Grasse, the CP line and the coastal line

26

Cf. the FNAUT – PACA quarterly newsletter, L’Aller et venir, and its treatment of specific themes.

27

For example, a programme with the host P. Dieuleveut La Chasse au trésor was devoted to the steam train and the Chemins de fer de Provence.

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First there was the freezing of motorway and road infrastructure projects. The building and public works (BTP) firms were expected to turn their attention to public transport infrastructure and to the urban redevelopment it required. The DTA provided an opportunity for engineers from the public transport services whose projects had been frozen for years, to stimulate a concern for public transport issues in towns and gradually to force town councillors to take a stand in favour of environmental protection and enhanced public control of the coastline. Some councillors were particularly sensitive to these proposals because a growing awareness was perceptible in the urban population. The mayor of Cagnes-sur-Mer, Mr Nègre, listed the signs of change: inhabitants on the coast complained about the noise from vehicles on the RN98; neighbourhood committees in the town centre asked him to take steps against speeding and the lack of civic responsibility of a minority that transgressed all the rules, especially speed limits, red traffic lights and stop streets; the League against road violence had recently set up in the Alpes-Maritimes. The mayor therefore asked the competent authorities, the DDE, to reinforce safety and speed controls. The most recent factor of change is the fact that the associations have progressively become legitimate interlocutors. There has been a shift from a binary conflict between two opposing groups – in which civil engineering companies, the chamber of commerce and industry, and the political authorities in favour of the A58 were in conflict with associations and a few councillors of small towns in the Moyen Pays – to a more complex situation. The DTA currently constitutes a space for dialogue between yesterday's opponents28. Finally, we have recently witnessed meetings between representatives of the chamber of commerce and industry, the BTP federation and representatives of associations, to find points of consensus. 1.3.2

Communes in the middle of the bridge

Yet an analysis of the PDUs clearly illustrates the technocratic nature and ambiguity of this change taking place in public transport. Potential for the development of public transport in urban areas In urban areas on the coast, potential for the development of public transport is huge because towns are dense and extremely touristic. "The centre of Nice has the same density as Parisian districts … We're on the coast, tourism is booming, there's a rate of walking in the centre of Nice equivalent to 76% of all movement. And tourists account for 80 to 90% of all walking and it's the same in the centre of Cannes and the centre of Cagnes". Thus, there are more than enough reasons to propose public transport with dedicated lanes/rails, provided urban development ensures that private vehicle traffic is reduced in town centres. Experience with new tramways (e.g. Strasbourg, Nantes) confirms the importance of this clientele for the public transport with dedicated lanes/rails (TCSP). Will the Alpes-Maritimes PDUs take advantage of these favourable conditions ?

28

The same applies to the new Alpes-Maritimes transport agency (Agence de Déplacements), responsible for coordinating transport policies in the department. This agency groups together the authorities reponsible for urban transport, the state, the city of Nice and the Regional Council, and accepts associations interested in transport-related matters, as members.

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Contradictions in the Nice PDU The drafting of the PDU is reaching a conclusion. It has been a technocratic process; the technical services in Nice worked on it without consulting the population in any way whatsoever. In response to the demands of the Amis du rail ("Friends of the Rail"), a member of the FNAUT, the deputy director of transport said that they had had the public inquiry in which to express their opinions. Only information meetings are planned for the summer of 1999, but the municipality has generously subsidised the Association de tramophiles niçois (the Nice tram-lovers' association). Proposals by the PDU are contradictory: real efforts to develop the public transport supply (the tramway project with its two lines is finally being reconsidered; the creation of intermodal interchange centres; the narrowing of the main coastal road; better control of parking; creation of cycle paths) are not enough to offset measures in favour of road transport (weight of road infrastructure in the PDU). This ambiguity is illustrated in municipal debates on the connection between the A8 motorway and the southern urban motorway which will bring a lot of traffic into the centre of Nice and ruin all the efforts listed above. That said, most of our interlocutors think that, despite their criticism, the realisation of this PDU should be encouraged since it represents a break from "what has been done for the last 40 years". Hopes raised by the preparation of the Cannes-Le Cannet-Mandelieu PDU The PDU of the Inter-communal Public Transport Syndicate of Cannes-Le Cannet-Mandelieu is in a less advanced stage. Its preparation is no more democratic than that of Nice but it seems to be more coherent, particularly in the will to fight against pollution caused by cars. The progress report suggests taking space away from cars (e.g. decreasing parking, removing one lane on the main north-south road) and making it available for more environment-friendly modes of transport. It also suggests, correlatively, providing transport with dedicated lanes/rails to maintain an acceptable level of mobility. The engineers of the communes are fully involved in its preparation, as are the councillors of Le Cannet. In Cannes the councillors are less interested but it is true that "they're a team that's trying to save the furniture before the next elections".

2

ANALYSIS

We have just described a complex process in which mobilisation by associations imposed a concerted planning procedure that has started transforming urban transport policy. The functioning of the participation apparatus in this process still has to be analysed. Can we, in this respect, talk of participative Technology Assessment ? First we shall analyse the role of mobilisation in the participatory apparatus (Chapter 1). We then study the conditions of participation in the absence of specific procedures (Chapter 2). Finally, we study the stakes of expertise in which the effectiveness of the participatory apparatus is concentrated (Chapter 3).

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2.1 Indispensable mobilisation It may seem surprising that, in the example studied, conflict takes precedence over participation. We shall see that in this case mobilisation created the conditions leading to participation. 2.1.1 A policy hardened by expertise and projects Transport policies are black box policies29. They are singular public policies of which the system of reference – the essential principles and strategic choices – is inscribed in the technical systems and the expertise formatting them. That is why the main options of transport policies tend to escape traditional political debate. Motorway policy illustrates this hardening of policies. The strategic choices made in France in the 1950s (i.e. priority to motor cars, support for national productivity, modes of financing by concession, etc.) became irreversible through their inscription – in the form of micro-economic evaluations, financial constraints, mathematical models, etc. – in the traffic research that constitutes the core of transport expertise30. This research therefore incorporates a problem setting31, a certain formulation of the problem to solve in the transport field. Once this framework has been set, the motorway solution seems both obvious and necessary. The project is presented as problem solving, the "one best way"32. Expertise then formats the project and transmits to it norms from the past, progressively making any new formulation difficult. Growing irreversibility is another constraint weighing on the challenge to motorway policy. It stems from the fact that this policy is a network policy: its object is the realisation over a long period of a transport and communication network. Segments of infrastructure, built according to opportunities, progressively make the global project of the main line of the network irreversible. This domino strategy33is one of the favourite approaches of the Infrastructure Ministry. It can be presented in different ways: •

The existence of a project has a variable intensity: each step taken (location on a map, inclusion in a forecast, reservation of control, inclusion in the budget, etc.), each stage completed, is another step towards the realisation of the project.

•

"Fish bones" strategy or building access roads before the main axis.

•

Progressive realisation of the components of a broader plan, each one relying on the others. Two examples: the construction of the RN 202bis facilitated that of the A58 or the Lombarde tunnel and vice-versa; for each project, the traffic study of Project A (the nature

29

On this concept, cf. J. LOLIVE, op.cit.

30

On this question, cf. A. TRICOT, op.cit.

31

The contrast between problem setting and problem solving is developed by D. SCHÖN, The Reflective Practionner (How Professionals Think in Action), Basic Books, New York, 1983.

32

But it is dependent on a certain formulation of the problem to solve. That is why criticism of the project can be defined as a reformulation of the problem it claims to solve.

33

On this concept, cf.. V. BARNIER, O. SOUBEYRAN, La controverse du Somport (éléments de réflexion sur la conduite des grands projets d’aménagement), working document, March 1995, SET, CNRS-URA 911.

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and quantity of expected traffic and hence the expected cost-effectiveness of A) includes the construction of B and C (which provide part of A's traffic). •

"Occupy the field": each project in the motorway programme absorbs funds and suitable land, and places even stronger constraints – spatial, budgetary, competitive, technical, compatibility, etc. – on alternative projects.

Thus, given the socio-technological context defined above (monopoly on expertise, irreversibility of the domino strategy), and given the well-known hegemony34 of the Ponts et Chaussées over the Infrastructure Ministry and transport policy, the only way of enabling alternatives to emerge is mobilisation and conflict. 2.1.2 The freezing of projects re-opens the field of possibilities Given the combined weight of transport expertise and of the major projects which tend to make decision-making processes irreversible, opponents deployed a reverse strategy. The freezing of major projects on the Côte d'Azur (A8bis and A202bis), by weakening the spatial and budgetary constraints that made it possible to structure everything around the said projects, opened a new field of possibilities. Lessons learned from the conflict: the motorway – SDAU link Conflict around the A8bis helped to reveal the indissociable ties between motorway projects and the SDAU (doubling Sophia Antipolis, urbanisation of Saint-Vallier, etc.). This led to a redefinition of the framework in which projects are negotiated. Most often, negotiation of a project seems to be singularly detached from any local and social context. But certain projects – and the controversy surrounding them – cannot be understood without linking them to others. Administrative divisions require sectoral interventions by project and by contractor, while one of the assets of the associations and councillors on the ground is in their ability, on the contrary, to decompartmentalise. The freezing of the motorway project resulted in the freezing of the SDAU's forecasts and finally to a slowing down of projects. The reciprocal freezing of the two procedures has made it possible to open a debate concerning the inappropriateness of north-south partitions of the area covered by the SDAU and, more fundamentally, the type of development wished for by the Moyen Pays communes. The problem has still not been solved, even though it seems to constitute a focal point for future conflict. The syndicate formed around Vence, for example, to fight against the motorway project is currently defining development projects which could constitute the core of a "Pays de Vence" (Vence country). Paradoxically, the motorway conflict facilitated the structuring of these communes around a local development project. Finally, the conflict resulted in the DTA, the procedural framework of the reorientations underway.

34

I shall not revert to these well-known analyses: cf. J. C. THOENIG, L’ère des technocrates, L’Harmattan, 2nd ed., 1987.

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Action logic of the Coordination The action logic of the Coordination closely followed the projects and the associations' coordination was guided by the infrastructures themselves. We witness the linking up of associations with different concerns (especially associations of people living along the roads in question, associations of communes concerned, farmers' unions) who are all affected by the infrastructure plans. This type of coordination has facilitated action on several fronts. It has enabled those concerned to : •

avoid the slicing up of projects, so as to achieve an overall view of the infrastructure planned in a single territory;

•

watching the procedures, especially those linking the project to the territory in which it is to be implemented35.

•

slow down or even freeze unwanted projects. This type of action makes it possible to establish an effective moratorium, which has the effect of creating a situation potential for the setting up of future actions better suited to the actors in the controversy. Thus, the freezing of the A8 motorway and the cancelling of the Cannes-Grasse-Antibes development plan allowed for the establishment of a new procedure, the DTA.

2.2 How to participate without a specific procedure ? Although it involves deliberative and instrumental participation, the DTA is above all a territorial development procedure. It has produced no specific procedure devoted to participation, and for analysing this diffuse reality we shall use the concept of a dispositif de participation (that is, a participatory device or system). 2.2.1 The dispositif de participation36 If we examine the definition of the word "dispositif" in the dictionary (Petit Robert and abridged Littré): •

Way in which the parts of a device are arranged, the mechanism itself

•

Set of means arranged according to a plan

•

Plan according to which something is established.

The concept has the dual advantage suggested in its definition: first, it accounts for the compound nature of the participatory mechanism, the heterogeneous arrangement in which projects play as important a role as the actors; secondly, it combines the strategic efficiency of participation – its "arrangement according to a plan" – with this same compound nature. How can we account for a participatory experience which is not situated in the framework of a procedure ? We shall distinguish the formal arenas of decision-making from forums for

35

It is specifically the case for the conflict on RN202 bis in the Var Valley which we do not analyse(see note 17).

36

The best english translation for « dispositif » would be « setting ».

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debate and controversy: arenas close in around the circle of decision-makers bound together by an institutional procedure and territories of competence, and around forms of reciprocal recognition; forums open up widely to include citizens, opinion leaders and the media, thus contributing to debate on existing rules and to the exploration of new norms for action37. Of course the comparison has only a typological value and the practical entanglement between the two genres is increasing since the coexistence between different levels of legitimisation is considered less contradictory than complementary. Faced with wellorganised protest, good negotiation should rely as much on the actors of the representation as on those of the associative participation and those with the expertise. 2.2.2 Arenas, forums and antichambers 1) The dispositif de participation consists, first, of a decision-making arena: the procedural core of the DTA. Officials (DDE, DDAF, DIREN) work under the Prefect and the director of infrastructure in the department to define a new urban and regional planning tool. The DTA includes sustainable development objectives and provides for the participation of representatives of associations. 2) Three deliberative forums, the steering committees on which representatives of the associations sit, are organised around this decision-making arena: •

We have already presented the steering committee for the intermodal transport study. The importance of this committee is being confirmed since that is where alternatives to major projects (A8bis, A51, development of the lower Var valley) proposed by councillors and associations, are evaluated. It is also where arguments are put together to legitimate or discredit initial major projects and/or alternative projects.

•

The steering committee for the study of a revised project was intended to specify the risk of floods from the Var river and adjacent valleys (given the spectacular floods of 1994) for the purpose of completely redefining the management of the river and development of the Var valley. This study is also linked to the construction of the RN 202bis, an infrastructure planned for the right bank of the Var, that is fiercely opposed to38.

•

The DTA steering committee on which all the partners are represented, does not seem to be playing an important part in the research stage in which we are now. Its role may, however, increase when there are decisions to take that require arbitration.

3) The decision-making arena extends to several unofficial anti-chambers where more discreet negotiations take place. One of these interfaces interests us because it directly affects transport issues. In the framework of DTA work on the modalities of application of the law, negotiations are held between the councillors and the state services (DDE, DDAF, DIREN). One of these negotiations is on the acceptance, by the councillors concerned, of state projects and particularly those of Infrastructure (the 202bis, an east-west motorway of the A58 type,

37

B. JOBERT, “ Représentations sociales, controverses et débats dans la conduite des politiques publiques ”, Revue française de science politique, vol. 42, n° 2, 1992, p. 219-235.

38

The RN 202bis would dyke up the Var even more (in some places an encroachment of 50m on the minor bed is planned), and may well isolate adjacent flows even more. The artificialisation of the Var would be compounded by the existence of several communal "urban developmenet zone" projects on its banks. Thus, the city of Nice, limited by its relief, wants to spread out along the left bank of the Var.

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development of the lower Var valley) in exchange for more flexible laws (concerning mountains, the littoral and plans risk prevention) that would facilitate their own development projects. 4) There also exist other institutional arenas in which the communities treat urban transport problems. We have already mentioned municipalities, where engineers draw up the PDU without real dialogue with the population. We have not had the opportunity to introduce the transport division at the Regional Council39, and still have to present the transport division at the General Council. This latter service deals with inter-urban road transport. Given the large number of authorities in charge of urban transport, the General Council also has control over peri-urban lines with a high potential, whereas in most other agglomerations these lines are no longer the province of the general councils. But this large number of competing authorities in the department, with the underlying rivalry between councillors, prevents the General Council from playing its part in the organisation of lines and stimulating the complementarity of services, uniform rates, and so on. On the other hand, it actively participates in the intermodal study through the intermediary of the Bureau de la prospective (the forecasting agency) of the Department of Transport, whose mission is to reflect on the general organisation of transport and traffic. The forecasting agency provided the consultants (MVA) with most of the data enabling it to draft the intermodal model. That is also why the General Council commissioned the household survey for all the partners. 2.2.3 Passeurs and emergent personalities This dispositif split into arenas, forums and antichambers enhanced the role of passeurs40 who helped to reconstruct the problems by linking up different arenas. 1) First there are the association experts, two civil engineers from the Ponts et Chaussées. They are the ones who put together the technical component of the main arguments and the counter-proposals of the associations and councillors opposed to the project. Opening the associations' access to the epistemic transport community41, these experts have gradually become spokespersons on transport expertise, and particularly road-related expertise, within the associations42. They initiate the movements' learning process. Because they are members of the associations (one belongs to GEFIDA and the other to the Coordination), they also provide a link between opposing councillors and associations, through their proposals.

39

This is a pity because the Regional Council is the authority responsible for organising regional transport and especially rail transport.

40

This concept of a passeur is found in M. MARIÉ, Les terres et les mots, Méridiens Klincksieck, Paris, 1989, 214 p. It is similar to that of "marginal sécant" used in the analysis of public policy. It denotes an expert who participates in both scientific controversy and public policy communities, and sometimes contributes to political rhetoric. Cf. B. JOBERT, “ Rhétorique politique, controverses scientifiques et construction des normes institutionnelles : esquisse d’un parcours de recherche ”, in A. FAURE, G. POLLET, P. WARIN (dir.), La construction du sens dans les politiques publiques : Débats autour de la notion de référentiel, L’Harmattan, 1995, p. 20-22. I prefer it because it indicates the movement of these human mediators who define networks of alliances by moving through them.

41

In the analysis of public action networks, this transport community constitutes an example of the "epistemic community" in the sense of P. Haas. It is a network with four characteristic features: "1) a series of shared normative beliefs, resulting in the same action logic based on values common to each of the members of the network; 2) shared causal beliefs stemming from their analysis of the practices at the heart of the problems in their field of activity, and which form the basis for the elucidation of multiple ties between their actions and their goals; 3) validating shared notions, that is, criteria defined between them to evaluate and weigh up expert knowledge in their domain; 4) a common mode of operation, that is, common practices". Cf. P. HAAS, “ Introduction: Epistemic Communities and International Policy Coordination ”, International Organization, n°41, 1992, p. 3.

42

This is another explanation for the surprising weight of motorway solutions in GEFIDA's and the Coordination's proposals.

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2) The Green councillors are other passeurs. These two association leaders have become councillors: one is a deputy-mayor and the other a member of the General Council. They attest to the growing legitimacy of the associations and the popularity of their demands. In return, they amplify this legitimacy by linking the associations to the political arena: the General Council, the Regional Council and the Environment Ministry. 3) The mediating role of the public (or urban) transport engineers of the urban or regional communities could almost be overlooked and yet …! Some of them share certain concerns with the associations as regards public transport and represent these concerns in the communities43. These engineers have a direct interest in the success of certain alternative proposals. While their position obliges them to have reserve, they take opportunities such as the DTA to highlight concerns regarding town planning, to revive shelved transport and development projects and to influence their councillors with new ideas. 4) Finally, it is necessary to point out other key actors in the dispositif de participation: the emergent personalities who change the rules of the game within the arena. The first example concerns the central decision-making arena. While the Infrastructure authorities are omnipresent in the procedure, road specialists are in the background. Thus, the official responsible for monitoring and coordinating the DTA, M. Pieffort, belongs to the townplanning service of the DDE, and the chief-engineer of the Ponts et Chaussées who is steering the intermodal study is a specialist not on roads but a on air transport. These officials more readily reach consensus and are less directly involved in initial major projects than people from the infrastructure service, for example, might have been. The existence of these passeurs leads us to networks of alliances which are woven throughout the conflict and lead the dispositif de participation. 2.3 The stakes of expertise In so far as the associations are confronted with a policy that has become set through expertise and projects, the transformation of this policy will require the emergence of new expertise and the conflict will focus on the problematic constitution by the association of a new network of alliances. But this network animating the dispositif de participation will be sociotechnological, to provide opposition to transport expertise. 2.3.1 Network-expertise (definition) Our definition of expertise draws upon the analyses of Michel Callon44 who considers expertise as an assemblage of heterogeneous elements, a network woven between three poles: • a socio-political pole composed of human actors endowed with competencies, characterised by interests or expectations; •

a scientifico-technological pole that produces certified knowledge and artefacts;

43

One of the head engineers working for the Département had previously worked for the municipality of the member of parliament for the Greens, Aschieri. But most of these engineers are not inclined to support the ecologists.

44

M. CALLON, A. RIPP, “ Humains, non-humains : morale d’une coexistence ”, Autrement, Série Sciences en société n°1, janvier 1992, p. 140-156.

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30

•

a regulatory pole of procedures and rules that constitute directives or recommendations for experts' work.

Expertise has to establish a compromise, a regulation between demands and constraints from all three poles. To align positions, the experts move to the side where the opposition and resistance is weakest. They can negotiate the actors' demands, interests and projects if the conflicts and relations with the incumbent authorities allow them to. They can transgress existing procedures and rules if the disputes and strength of the regulations allow them to. They can question scientific facts if the controversies and balance of power in the scientific community allow them to. It is impossible to know a priori what knowledge, procedures or actors and their interests will resist the most, i.e. what will be considered as hard or as flexible. Expertise is the dispositif which makes it possible to draw the graph of the resistance gradients. In any event, expertise results in an assemblage of heterogeneous elements considered to be sufficiently robust to have a degree of stability. What people know (or think they know) and what they decide (or think they decide) are aligned and mutually reinforce one another. 2.3.2 Outline of a new expertise-network ? We shall now sketch a map of this new expertise. The network is formed between three poles: human actors who form alliances; procedures that determine the range of people's actions; and the knowledge and artefacts that stabilise the alliances. Until now we have talked mainly about humans and their capacity for mobilisation; this section will therefore be entirely devoted to procedures and scientifico-technological products. Procedures for framing actions The procedural pole determines, to a large extent, the range of actions of associations and, more specifically, the combination of participation and opposition45 characterising it. Knowledge of the procedures in which they are involved provides associations with opportunities to take legal action in the Nice administrative court. It is a threat that they can brandish to improve the functioning of the dispositif, or a means used to slow down or freeze unwanted projects. For the associations involved in the participatory stage of the DTA, litigation was a last resort in case of failure of the participation. "So we said that if we don't manage to mobilise some elements in the government so that the decentralised services of the state agree to respect the mandate, we'll drop it, we'll sabotage the procedure and attack the DTA. We've got all the resources we need and then they also did something really stupid in the 202bis business that impacted on the DTA … Since all that had to be validated because of the strategic nature of the Var Valley, it commissioned an overall hydraulic study of the Valley, the founding study, from SOGREAH and the farmers in the Var Valley took them to court and won the case. The judgement was pronounced last Tuesday (20 April 1999), the contract is cancelled for irregularity since the work was started before the call for tenders was put out … That said, if the ministry appeals we'll change our tactics … In any case, it's cancelled and the problem is that this re-founding study is also a founding study for the DTA on the Var Valley. What are they going to do ? Are they going to try to force

45

Cf. P. LASCOUMES, L’éco-pouvoir, op.cit.

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their way through with the DTA without a founding study ? That will be just perfect ? We'll go to the Conseil d'Etat and then we're laughing. The principle of precaution is not respected.” Artefacts for stabilising alliances In the establishment of networks of alliances, technical objects and artefacts reinforce the longevity of alliances. We shall give three examples of these strange attractors. The projects of the Alternative enhance its capacity for interessment The associative counter-assessment is based on the the motorway – SDAU link revealed by the conflict. The report criticised hypotheses of quantified growth in populations and employment, on which the major development projects were based (the A8bis, doubling the size of the industrial park, etc.). These hypotheses were said to be over-rated by the extrapolation of growth in the 1960s and 1980s, at best. Instead of a single road (A8 bis) intended to solve all traffic problems, the counter-assessment proposed a series projects, each suited to specific traffic. These projects constituted an interessment device in an enrolment process and the analysis of some of them will enable us to describe the associations' attempts to expand the support they have in their struggle. 1) The weight of road projects : We have already mentioned the imbalance in favour of road transport characterising the alternative programmes proposed by the GEFIDA and the Coordination. But it is the ambivalence of the programme that makes it consensual. In fact, the presence of collective transport projects clearly reflects concern for environmental affairs expressed in the discourse of a large part of the population. But the domination of road projects reflects the attachment of those same people to their private vehicle. They are not prepared to give it up, except occasionally perhaps. 2) Work for SMEs in the building and public works industry (BTP) : In March 1998 the Coordination issued an open letter to contractors in the Alpes-Maritimes, presenting a specific argument in favour of the global transport plan proposed in 1996. The letter was an attempt to dissuade BTP contractors from working on the "grandiose projects" of the Infrastructure administration (A58, 202bis, Mercantour tunnel) by pointing out to them that the realisation of these projects was distant and hypothetical, that only foreign multinationals could obtain such enormous contracts and that the link with Italy (Nice-Cuneo through the Mercantour) was likely to lead to competition from Italian civil engineering firms rather than the markets they hoped for. By contrast, according to the author of the letter, the projects of the Alternative are smaller. They are easier to finance because they can be split up and are therefore more accessible to local building and public works firms. 3) "Bury the RN98 to restore the coast" : The Alternative's project was to build the RN98 underground, making a coastal road on two levels: the underground part reserved for fast traffic and the surface road for local traffic and tourists. The associations' project planned the first section of this road in Cagnes-sur-Mer. The new mayor of that town, M. Nègre, was drawn to the project because he wished to improve his part of the coast. He also wanted a coastal road reserved for tourism, on which traffic and speeds were limited. 4) "Inaugurate the Cannes-Grasse line during his mandate": If one looks at things from a politician's point of view – that of a regional councillor, for example – the re-opening of the Cannes-Grasse railway line is attractive because it is a limited operation, with an average cost of 200 million francs, that can rapidly be inaugurated (two years' work) before the next Chapter 2 – Case study of urban transport

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elections. Above all, it is an alibi to mask hesitations and reluctance regarding a more ambitious rail project, a third rail on the coastal line that will probably not be included in the 12th Plan due to a lack of time and financial resources. The household survey strengthened the position of the defenders of public transport. It provides us with a second example of the artefact mobilised in the constitution of a new expertise. This study was carried out by the transport department of the General Council in the framework of the DTA. The Côte d'Azur household survey was intended to record and analyse the journeys made by people living in the department. It was to be added to the intermodal modelling study. But this work had an unexpected effect: the study revealed the huge number of people who walked in Nice (65%) and Cannes. "Out of the 3,7 million journeys per day, one third are on foot, with an average distance of 600m. It's in short distances that we have the largest volumes". The highlighting of these facts had an important effect on the councillors of the agglomeration: it revealed an unknown figure, that of the voter-on-foot, which helped to relativise the arguments of the shop-keepers, spokespersons of the car-in-town argument that blocked all innovation in urban transport. It was one of the reasons for a change of attitude among councillors, which allowed the communes' technical departments to revive the intra-urban transport projects. 2.3.3 Connection with political decision-making The Alpes-Maritimes DTA is behind its original schedule. It should have been finished at the end of 1998 but the work will probably only be finished in the autumn of 1999. We are therefore unable to conclude this work on what will finally be the trial of the dispositif de participation: its link with political decision-making. Can we forecast the types of project that will be opted for by the DTA, and use that to assess the extent of the "green" amendments to the DTA ? Not absolutely, but there are rumours … Public transport That should be the DTA's main conclusion: there will be a shift of investments from roads to public transport. There is consensus in favour of public transport, even if the situation regarding inter-urban transport options is still vague (tram / train or tram only; use or not of an existing infrastructure, etc.). 1) Urban transport : There is a strong development potential in urban transport in the coastal agglomeration. This might be a priority for investment. Nice has taken this problem in hand in the framework of its PDU, and its TCSP project (a tramway) is making good progress. For Cannes-Le Cannet-Mandelieu, reflection on the PDU started later. It seems more coherent but its TCSP project (trolley bus or bus with its own lane ?) has stumbled against a problem of inter-commune cooperation. 2) Interurban transport : As far as inter-urban transport is concerned, the options for development are reduced because dwellings are so scattered. The servicing of the Moyen Pays (re-opening of the Cannes-Grasse line, improvement of the Chemins de fer de Provence, the Paillon Valley, the servicing of Sophia-Antipolis) could, however, become a priority in ten years' time, once the backwardness in urban transport has been remedied (cf. above). But there are multiple parties involved and still little coherence between them.

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3) The coastal line : As for the third rail on the coastal line between Cannes and Nice, this is an interesting option. In view of the heavy, entirely urban traffic on this section, a form of public transport such as the railway seems feasible but is expensive (3 billion francs) and would probably disfigure the coast. That is why it would first be necessary to make an indepth study of all other solutions using the existing rails. Road transport Despite what has been said above, it is hardly likely that the Infrastructure authorities will agree to an exclusive public transport scenario without major road infrastructure: either the 202bis or any other east-west infrastructure (among the different possibilities). 1) The RN 202bis : It has encountered difficulties in dealing with hydraulic problems and problems of a legal order, but it can rely on its DUP (certification of public utility) and will probably be approved in the DTA. 2) On the contrary, decisions the east-west link will hardly result from DTA project. What option will it choose for it ? •

The associations may have won their battle against the A8bis (the A58). Their arguments are used by some members of the administration. The project was very expensive and did not solve enough problems concerning urban travelling close to the coast. Its opponents feared that it might lead to intensive urbanisation in the Moyen Pays, something the local population did not want.

•

The Alternative project proposed by opponents among the councillors was evaluated in the framework of the DTA by a consultancy firm SETEC, criticised by the associations for its partiality. The study concluded that the alternative project (underground road between Biot and Nice) would not capture enough traffic to relieve the A8. It suggested an extension to the initial project, with the underground road going all the way to Cannes. In this way the road would capture more traffic but the cost would be exorbitant. After this study it seems that Infrastructure wants to exclude it.

•

Supposing these two options were excluded, there is a third one, called the Median, from the centre of Nice to close to Villeneuve-Loubet, with extensions to Sophia-Antipolis. There is a fairly wide degree of consensus on this option because it is based on a project proposed earlier by the councillors. This road would be advantageous from the point of view of local servicing, but it would compete with public transport projects (it would be parallel to the Nice-Villeneuve-Loubet TCSP or to the coastal road). The problem of its funding and its contractors is an acute one because it would also be very expensive and would not have tolls. It could pose problems of integration into the environment.

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3. CONCLUSION

The French process of assessment and policy-making is legalistic, highly top-down and technocratic, especially in the urban transport policies. That’s why ANT seems so suitable for analyzing the favourable conditions of pTA exercise. Let’s go over the main research questions and outline answers. The emergence of pTA exercise : the indispensable mobilisation Within this highly technocratic-legalistic context, controversy/conflict appears to have been a pre-condition for the opening up a policy deliberation to wider (if still quite limited) participation. Given this entrenchment of the DTA in conflict and strategic games, we cannot analyse the participation being performed there from a purely deliberative viewpoint such as "an ethic of organised debate so that the different parties can express their positions and put forward their interests". This univocal conception of participation seems to attest to a rapid reading of Habermas46 which takes as the only type of communication that which aims at agreement, and too quickly forgets the other types, in particular teleological communication. Now, this communication with a specific aim is frequently used by those responsible for projects and by policy makers. For them participation, whether imposed on them or the result of their own choice, is "intended to facilitate the continual adaptation of the enterprise to the social reactions provoked by any large project, and the conciliation of society's interests with those of the milieus concerned"47. This definition has the advantage of highlighting the other dimension of participation, that is, its instrumental character sought after in the realisation of projects. Participation in the DTA tightly entangles these two dimensions: deliberative and strategic. Associations satisfy this ambivalence because it is best to have a varied range of actions if one hopes to change the framing of a technocratic policy "à la française" and construct new possibilities for action. The organisation of pTA exercise : the dispositif de participation Like in the UK case, the administrations in charge of the experience do not want to be blocked by clear and well known procedures. How can we account for a participatory experience which is not situated in the framework of a procedure ? How to adapt to this fuzziness of procedure ? A broader scope may allow to better catch the actual role of participatory event in a broader social game involving various actors, processes and arenas. The dispositif de participation behind the DTA is diffuse, scattered between institutional arenas (and their unofficial antechambers) where associations are not admitted, and the forums of debate and controversy from where they exert pressure on the arenas. As a result, the question of the functioning of the dispositif becomes that of the articulation of arenas and forums and hence the role of passeurs, the human mediators who participate in diverse arenas/forums, each following different action logics.

46

Cf. in particular J. HABERMAS, Théorie de l’agir communicationnel , Fayard, Paris, 1987, t. I, Rationalité de l’agir et rationalisation de la société, 448 p, t. 2, Pour une critique de la raison fonctionnaliste, 480 p.

47

This formulated definition is cited by Nicolas Mettan, the economist and specialist in territorial development, in Lausanne. N. METTAN, “ Place de la négociation dans les processus d’aménagement du territoire et de protection de l’environnement ” in J. RUEGG, N. METTAN and L. VODOZ (dir.), op.cit., p. 79-94.

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The outcomes and issues of the pTA exercise : the socio-technical debate Since transport policies are black box policies, debate on decision making is not only about translating values and interests ; it is also a matter of changing the socio-technical networks which structure their spaces of decision. To reverse the balance of power, the opponents in the dispositif de participation use counter-projects and procedures. The procedures, in particular legal procedures, enable associative action to influence the decision. The associative counterprojects constituted an interessment device in order to enrol new allies. From this perspective, the strength of a project is only worthwhile if it develops solidarity with other human purposes and actions. This socio-technical strategy build up a new network of alliances to provide opposition to transport expertise. The impact of the pTA exercise : the counter-irreversibilisation This long and tumultuous process analyzed in the French case is close to succeeding in changing a decision making process and modifying the solution chosen, mainly by broadening the space of socio-technical options. We cannot assess precisely the extent of the "green" amendments to the DTA but there will be a shift of investments from roads to public transport. Now, I will point out a last difficulty in this links to policy-making. This constraint will probably weighs on DTA decisions concerning transport. How to force your successors to implement your policies ? The difficulty lies in the amount of time and substantial costs involved in transport policy. Policy changes produce their effects after a long time only. Take the example of the PACA Regional Council: the new majority displayed a strong policy in favour of public transport but in fact budgets were limited. In the current budget there is a margin of only about 3%, taking into account the projects underway and compulsory or renewed expenditure. Thus, the new councillors are content to orientate future options, that is, to prepare budgets and operations that will force their successors in three or four years' time to have policies oriented in favour of public transport. So, counter-irreversibilisation is the last favourable condition for pTA exercise.

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GLOSSARY OF ACRONYMS

French acronym

Definition

BTP

Bâtiment et Travaux Publics Building and public works

CERTU

Centre d'Etudes sur les Réseaux, les Transports, l'Urbanisme et les constructions publiques Research centre for networks, transport, town planning and public works

DDAF

Direction Départementale de l'Agriculture et de la Fôret County authority (state) for agriculture and forestry

DDE

Direction Départementale de l'Equipement County infrastructure authority (state)

DIREN

Direction Régionale de l'Environnement Regional environmental authority (state)

DTA

Directive Territoriale d'Aménagement Regional development directive

DUP

Déclaration d'Utilité Publique Certification of public utility

GEFIDA

Groupement pour l'Etude et le Financement du Dossier Alternatif Group for investigating and financing the alternative projects

PACA

Provence-Alpes-Côte d'Azur

PDU

Plan de Déplacement Urbain Urban movement programme

POS

Plan d'Occupation des Sols Local land-use regulations

SDAU

Schéma Directeur d'Aménagement et d'Urbanisme Urbanisation and development plan

SNCF

Société Nationale des Chemins de Fer French national railways

SOGREAH

Société Grenobloise d’Aménagement Hydraulique

TCSP

Transport en Commun en Site Propre Public transport with dedicated lanes/rails

TGV

Train à Grande Vitesse High Speed Train

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CHAPTER 3 THE FRENCH CITIZENS CONFERENCE AS A PARTICIPATIVE TECHNOLOGY ASSESSMENT Céline Varnier, Pierre-Benoit Joly and Gérald Assouline

INTRODUCTION

Until 1996 there was essentially no public debate in France about the use of genetically modified organisms (GMOs) in agriculture or food, and French public policy was broadly supportive of the development these new products. A few activist groups, like GREENPEACE, tried to mobilize people on GMOs. But they had had no credibility in this field. The GMOs question was technical and only treated by scientific journalists, who have a rather positive view about the technological innovations because of their background. The situation was well under control by the stakeholders, who were a small and homogeneous group. They were essentially scientists, who work in molecular biology, civil servants in the DGAL (Direction of Food at the Ministry of agriculture) and executives of firms, who work in molecular biology. The CGB, Commission of Biomolecular Engineering, the expert advisory committee responsible for GMO releases, was the main place, where these different actors meet. Axel Khan was then the chairman of the CGB, in which were elaborated the evaluation's rules for risks of GMOs, in application of the European Directive about the dissemination of transgenic plants in environment (Directive 90.220). Since the creation of the CGB in 1988 the France had been the European country, which had most received the tests. "But in the period 1996-1999 all of this changed. A series of contradictory decisions were taken with regard to the first genetically modified crop ever authorised on the EU market, a pest-resistant maize developed by the firm NOVARTIS (maize Bt176). More generally governmental policy on agricultural GMOs began to change in response to demands for a more precautionary approach to environmental and health risks and for more transparent and participative decision-making procedures. The government organised a Citizen's Conference the 20 and 21 June 1998, which is here the subject of our study. But the Conference did not close the public debate and controversy and by the end of 1999 public policy on GMOs was in disarray and transgenic crops had become a focal point for broader controversies about science, technology, and environmental risks in France"48. METHODOLOGY

48

See MARRIS Claire, Swings and roundabouts: French public policy on agricultural GMOs 1996-1999,Centre d'Economie et d'Ethique pour l'Environnement et le Développement (C3ED).

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The case study is based on several documents edited by the Parliament and the government, many articles about the Conference of Consensus and studies written by several experts in sociology. The main source of this report are the semi-structured interviews of 32 people : Most of the interviews were made in the framework of an other research project about the GMOs controversy financed by the French Ministry of Agriculture [DGAL project]. All these interviews included the relevant issues of the adapta semi-structured questionnaire. Additional interviews with deputies have been realised in order to prepare the present report. 2/3 of interviews were realised by at least one of the adapta French coordinators. 1/3 was made by an other participant in the DGAL research project, Claire MARRIS. 14 of these interviews were undertaken before the conference, 11 after and 8of these interviews were undertaken before and after it They were tapped and transcripted. We interviewed 11 people being involved as experts in the Round Table of the conference. These people were representative of NGOs, retailers, seed producers, Ministry, public research and agricultural trade-unions. 49 18 stakeholders of the GMOs controversy, who did not participate directly in the conference process, were met. They only observed the conference from a more distant point of view and were selected to give a broaden overview of the range of opinions about the role of the conference in the assessment of the GMOs technology. These people are representatives of associations for environment protection (Ecoropa, FNE, AGIR pour l'environnement), researchers and professors in public research institutions, in favour of or against the GMOs, agricultural Trade-Union representatives, consumers ' associations, retailers, seed producers, food industrialists, top public servants close to the government, members of Parliament, and the facilitator in the Conference.

1. THE CONFERENCE AS A SOCIAL AND POLITICAL EXPERIMENTATION : ORIGIN, PROCESS AND OUTCOME 1.1.

Origin of a French PTA about GMO

1.1.1. Chronological mark of a controversy Opening of the public controversy Plant biotechnology has been an important area of public policy and was first debated in various institutions, and notworthly at the French Parliament in 1992. However, the public controversy began in late 1996. We just recall the main events that occured from 1996 on in order to set the scene. -the petition of Scientists in May 96 In May 1996 the call for a control of genetic engineering 's applications was launched. The petitioners, who were scientists, doctors and professionals of Health field, asked for a

49

No lay people could be interviewed.

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moratorium banning the commercialization of GMOs in alimentation. They thought that GMOs create new risks, which are not known and not controlled enough. The petitioners were not specialists in molecular biology but ecologist or botanist for example. That's why the actors50 in this GMOs' world were not worried about this action and denigrated it by a communication about the incompetence of the petitioners. The aim was to minimise the credibility of this movement. But the CGB members seemed to be unaware of important things: üFirst the movement was led in France by M.PELT, highly skilled Professor of botany. This emergent personality, who is often present in the media had an important role. üSecondly this petition had an organisational basis : the environmentalist association ECOROPA, which tried to give a structure to the networks of scientists having signed the petition or being favourable towards some of the claims. Indeed, the call was close to some anxieties of many scientists, who were not ready to sign a petition but who did not agree with political orientation about GMOs. -October 1996 : first cargos with American soybean in the French ports GREENPEACE militants launched a campaign against them and block unloading in ports. The GMOs were in Europe and began to be a part of our food whereas the population did not know about it. The lecithin extracted from soybean is present in about 60% of the transformed food products. And nothing was decided to ensure the labelling of this soybean, which was voluntary not segregated from the non-GM soybean by the US exporters. This entry led to strong reactions from consumers ' associations, who rapidly turned against the actors of the retailing system and the food industry. In a very short period, the controversy gained in importance. The press for the general public understood what was going on and began to take an interest in this subject. -"le soja fou" (the mad soybean) : a parallel with the crazy cow the 1st November The newspaper called "Libération" ran as a headline in first Page « Alerte au soja fou ! (Mind mad soybean!)». The comparison between GMOs and Creutzfeld Jacob disease, which was latent in the minds, was made. The amalgam was criticised by some scientists. They did not see the link between these two topics, which are biological very far but sociological very close : (i) there were in both cases an important change in our food without a clear information for the consumers ; (ii) in both cases the economical pressure succeeded even if the doubts about the impact on health and environment were still strong ; (iii) these two topics were associated in minds with "crazy" agriculture, which is productivist. -In Decembre 1996 The European Commission authorised the commercialisation of maize BT 176(NOVARTIS) : The European regulation requires the Members States to take steps to have this decision applied. The way the French government handled this decision provoked a major breakthrough in the public arena.

50

like the CGB, Firms, scientific journalists…

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3 February : Prime Minister JUPPE announced the authorization to commercialize the maize BT and the obligation to label it. 12 February : he announced to the great surprise the ban in France on the cultivation of Maize Bt because of the risks for the environment. In other words, the 3 hybrid varieties of maize derived from Bt176 would not be added to the Official Catalogue of Varieties. No official reason was ever given for this decision. It is generally accepted that Prime Minister Alain JUPPE was influenced by the then Minister for the Environment, Corinne LEPAGE. This "decision JUPPE" meant that the commercial release (i.e. import, sales and consumption) of GM maize Bt176 was authorised throughout the European Union, including France, but that cultivation was prohibited in France. The 13th February : the next day Axel Kahn, chair of the Comité du Génie Biomoléculaire (CGB), which had actively supported the application throughout the procedure, resigned in protest against the governmental decision. This third event marked the entry of politicians in the debate. This decision was criticised because it was justified with reasons, which had doubtful bases. This position was criticised from all sides as being totally incoherent (environmental associations, who are not fooled by it ; the consumer associations, retailers and the food industry because the maize could be introduced in France without labelling51, farmers unions and other professional agricultural institutions, who thought they were in situation of unfair competitiveness, and biotechnology companies like Novartis : after all the hurdles they had overcome to get this far, "it was as if the sky had fallen on our heads". The incoherence of the decision led to parliamentary questions addressed to the government. This political intervention in this issue played an important role. All the necessary characteristics were combined in order to be treated by the media. This event opened a new space of negotiation in a process too, which was seen until then as ineluctable. "These "JUPPE" decisions were the one event which most catalysed the ensuing controversy on GMOs crops. It marks the transition in the public policy on GMOs for food and agriculture in France, from the "pre-1996 period", to the "post-1996 period". Reinforcing this change of context this signalled the beginning of a range of changes in the national GMO regulatory system." 52 second U-turn : "decision JOSPIN" -change of government In April 1997, President of Republic CHIRAC decided to dissolve the parliament and call premature parliamentary elections. These were held in May and his centre-right party (RPR) lost. The socialists, in alliance with the Communist and Green parties, won the elections and Lionel JOSPIN became Prime Minister. He appointed Dominique VOYNET, leader of the Green Party, as Minister for the Environment. In line with the French constitution, Jacques CHIRAC remained President even though his party, the RPR, no longer held power in Parliament. This paradoxical situation is called "cohabitation". 51

Remark : the situation with the maize is not the same as which with the soya because France imports no American maize but only "corn gluten feed" exclusively used in animal feeding.

52

MARRIS Claire, op.cit p.2.

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-authorization of cultivation the transgenic maize On 27 November 1997 the new left-green government announced that it would overturn the decision of the previous government and would authorize the cultivation of the Novartis maize. We can notice that a right-wing government banned the - cultivation of the - GM maize, and a left wing government authorized it. And this was despite the fact that the Green party, which is a member of the new coalition in government, has explicitly expressed its antiGMO position during the electoral campaign. The decision of this authorization was formalised on 5 February 1998 when three hybrid varieties of GM maize derived from the Bt176 line were added to the Official Catalogue of Varieties. "In order to demonstrate government consensus and openness on the issue, a press conference was held with the Prime Minister and all four relevant Ministers (Agriculture, Environment, Health and Research). Public participation in decision making, transparency, and the precautionary principle were key concepts emphasised throughout the press releases. The maize would be authorised, but GM crops other than maize would not be accepted (notably not oilseed rape and beet). The permission to cultivate the GM maize was to be temporary, for only three years, and a procedure would be set up for monitoring the health and environmental impacts of the commercial cultivation of this Bt176 maize in France. This is referred to as "biovigilance" in French. At the same time, the government announced a number of measures aimed to improve transparency for the public: The government would launch a broad public debate on GMOs via a Consensus Conference. The participation of environmental and consumer NGOs in the CGB would be strengthened. GM food products would be clearly labelled."53 1.1.2. Why the government decided to organize this Conference ? a model thoroughly tested -a great public debate for a social acceptability of GMOs The chosen form was the consensus conference, already tested in some of European countries : « This initiative allows to test a participative democracy ; its aim is to develop information and open debate about the scientific choices thanks to a dialogue between citizens and experts" (extract of the government declaration). The OPECST, office in the parliament of science and technology assessment had to assure the independence and neutrality in the debate. In the view of top civil servants, who were the pioneers of this new political line in the Ministry of agriculture, in the ministry of environment and in the government, a large debate

53

MARRIS Claire,op.cit p.2.

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about GMOs was a necessity. The modifications introduced by GMOs are indeed so important that they could not be assessed as usual. The organization of a large debate was a necessity because of the lack of social acceptability for GMOs. « A group of experts are not able to have together the social debate. If a debate about Society's choices is not set up, the technocracy is substituted for politics.» (X, Ministry of Environment). -The Consensus Conference: a model, which prevents a debate's polarization The choice of a Consensus Conference was perhaps determined by urgency of the situation, by the pressure of public opinion in this controversy and by the ability of this "prêt à porter" solution to catalyse the debate. The risks of overflow due to the organization of a great debate about a controversial issue have convinced the policy makers to choose a debate's system many time successfully tested in North European countries. This Consensus Conference was able to reassure the decision-makers. In a Consensus conference the main role of the citizens panel allows to moderate the polarization in the debates while it allows the expression of median views too. The citizens are chosen because they are neither militant actors nor directly already engaged in the debate and because they have no specific skills, which could have distinguished them from ordinary citizens. A lot of polls were indicating a 70% opposition to Gmos in the population. "Thus, in my opinion the public discussion it is primarily, finally (...) the conference of consensus it is primarily a way of stimulating the debate in France and on behalf of people who have not" extreme" positions." (X, Ministry of Agriculture) -a solution to keep the USA waiting Another purpose was pursued. In all international negotiations, the Ministry of Agriculture was subject to American pressures in this GMOs issue. The American policy makers thought that the European refusal to commercialize GMOs was harmful to USA and was an outcome of protectionist tactics. The threat of an American complaint to OMC hanged over France. How could France make USA understand the reality of European social movements and the importance of acceptability problem? The Consensus Conference allowed inserting public discussion in a calendar of governmental action. Face to external pressure the government thus had arguments to differ its decision. "We had a parliamentary report (LE DEAUT report), we had a Consensus Conference taken into account in the report, we had suggestions from the Parliament and one government who would take his decision. And this was "presentable" in an international point of view. There was a clear calendar for the preparation of the decision and for the decision. So this conference allowed us to hold out on the international scene during few months, because the government had decided not to take others decisions about GMOs cultivation and commercialization before the Conference and before the report of LE DEAUT. (…) (…) this allowed us to have a compromise with M. Clinton, which was : French decisions about GMOs before July 1998"

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(X, DGAL, top administration in agricultural Ministry)

the purposes of the Conference for the organizers : the legitimization of governmental decision? -integrated into work of OPECST i.e. under control Thus the Conference was very early integrated into work of the OPECST. In theory, it was an advantage insofar as this insertion could ensure a good relation between this exercise and the national representation. For the Office this debate was led within the framework of the study of its President Jean-Yves LE DEAUT, which consequently comprises four different shutters: üthe study itself during which the rapporteur auditioned 250 people; üa public audition with open debate (during which the experts and the representatives of various lobbies confronted their arguments); üan Internet forum, opened in April 1998; üthe Citizens Conference But this encapsulation of the conference in OPECST agenda on GMOs minimised perhaps the possibilities to "really" stimulate a "great public debate". It will be developed in Chapter II. -to "start debate on healthy bases" The required objective for the government: it was not a question to substitute the opinion of 14 " ingenuous " for that of the experts, but to supplement it because, taking into account the complexity of the problems, the opinion of the experts was not enough to take a decision. The debate must thus contribute to a definition of the acceptable risk standards. The conference was not aimed at substituting the national representation or at developing a direct democracy. The goal of this Conference was, upstream of the decision, to light on the political leader. "It is necessary to start a debate likely to clarify the public opinion while launching it on healthy bases. " X (organizer) 1.2. The Conference 1.2.1. structure and process Timing Given that M.P. Jean-Yves LE DEAUT, President of the Office, committed himself presenting his report in July 1998, the Conference of Citizens must thus have taken place before the end of June. It was a very short time, as underlined it retrospectively the members of the Steering committee themselves (Boy 1999). That also resulted in choosing one period Chapter 3 – The french citizens

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which was not more very good: in June, France lived at the rhythm of the World cup of football; the summer holidays, were then likely to erase the effects of the Conference. The adaptation of the Danish model Many important adaptations were introduced. Most of them may be interpreted as an attempt to better control the exercise. -Steering committee : no "passeur" The composition of the Steering committee was rather largely determined by the insertion of the Conference in the preparation of the report. This Committee included 7 members. Four of them formed the group of experts set up by the Office for the report Le LE DEAUT. This composition indicates a significant choice as regards the method: not to introduce representatives of associations into the steering of the operation. It was also the mark of a will of protection of the experiment with respect to the attempts at handling of any kind. This choice had a cost, as we will see it: that of a weak implication of associations in the device. In the Steering committee, only M.A. HERMITTE could play the role of " passeur 54". She is given a strong credit in the associative world because of her critical work on property rights of living being and blood contamination crisis. Her critical positions on the legal framing of biotechnologies allow her to be listened at the same time in the administration and the associative world. But if it counted an expert close to the associative world, the steering committee was essentially formed of experts, considered by some actors as more or less explicitly pro-biotech in their majority. This fited well with a logic of distrust compared to the actors who were already mobilized in the debate. However, such a choice had significant consequences. On the one hand, it deprived oneself thus of the possibility of using the Steering committee as a space of deliberation where could be discussed the various questions relating to this initiative. Widening the composition of the committee would have probably increased the risks of " overflow " compared to framing initially fixed, but increased probably the legitimacy of the whole exercise. That could have supported the process of appropriation of the Conference by NGOs. The choice was thus that of a strict framing. Moreover arises then a theoretical question of validity of the step: one wishes to support the participation of the citizens to break with the exclusive relation experts/decision makers, but with this intention, upstream, one entrusts the operation to the experts. In addition, keeping the associative world and the lobbies in the backgrounds caused reactions and maintained during its preparatory phase an atmosphere of suspicion on the nature of the operation. -No device for a serious evaluation In any experimental step, the device of evaluation plays a central role because it conditions the possibilities of capitalization of the experiment via processes of critical reflection and feedback experience. This point is generally underlined by the specialists in the Conferences of consensus (Joss 1995). In spite of the repeated proposals of several groups of researchers, the Office refused to set up a device of evaluation independent from the steering committee. It 54

"passeur" does help to reconstruct the problems by linking up different arenas. See Transport report, France, Page 14

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nevertheless agreed to film the sessions of formation and to give access to the videocassettes to the researchers in social sciences, which would make the request of it. These materials are certainly interesting, because they are useful to clarify the internal running of the event. But nothing has been proposed to assess , to analyse outcomes and impacts in relation with the objectives. The only available balance has been published by one of the organisers (Boy, 1999) but they do not make it possible to make a total evaluation of this experiment, nor to even carry out more fine analyses on the role of the participation in these conferences55. .-The selection of the members of panel A poll institute selected the members of the panel.56 Taking into account the unusual character of this experiment and the polarization of the debates, the organizers feared to build the sample with voluntary candidatures. The selection by an institute of survey made it possible to avoid such a risk. The objective was then to create a “balanced, a without a priori opinion” sample, feeding criticisms of lack of representative ness of the sample in relation with society concerns. However it made possible to develop another risk. Given that the application form did not lead to an individual initiative, the risks that some citizens give up during the operation were high. It was one of the major concerns of the facilitator, who underlined the difficulties of this "test", on a physical and psychological level for the participants in the panel. -The consensus Significant and symbolic act : the steering committee suggested to rename this experience. France has thus organized a " Conference of Citizens ". This change of heading marks the reserve with regard to a culture of consensus, extremely present in the Scandinavian countries. By tradition, the agreement in France arose less from the consensus than from the compromises established in a logic of opposition and conflict. Moreover, the distance taken with regard to the consensus probably makes it possible to gain flexibility. One can reaches more easily to a fruitful outcome if the consensus is not required for the whole of the text. In a citizen's conference the agreements on a question and the differences of opinion are underlined, which leaves more flexibility in the use of the text for all the actors and in particular for the public decision makers. The preparatory phase A group of 14 ordinary citizens were selected by an institute of survey and given two weekends of information and formation about GMOs57. The citizens panel then elaborated a set of questions. The facilitator indicated a posteriori that it was one crucial moment in the constitution of the group because it had to pass from the phase of formation to the phase of central actor in the device. Which are the questions, which are in the core of their concerns and to which they wish to have answers in order to be able to give a well- argued opinion on the GMOs? The members of the panel had rather easily agreed on a score of questions, which are gathered in 5 topics. 55

Example in (Mayer 1996).

56

In Denmark 15 participants are selected after a spontaneous application aroused by an annoucement largely broadcast in the media.

57

Certain trainers play then the role of experts at the time of the public Conference, which is not very orthodox!.

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The 20 questions are grouped up into 5 themes: environmental impact of GMOs, sanitary risks, information for consumers, the legal questions and the way in which the public decisions reconcile the contradictory interests. The choice of the 5 topics was very significant. On the one hand, the public Conference was structured around these topics. For each one of them, a round table was constituted where are invited 5 or 6 people who represent what the members of the panel regard as the stakeholders. The guests were indeed not only " scientific experts ", but they were also representatives of associations and lobbies. The first two table-rounds, relating to the medical and environmental risks, were made up according to a common model: a scientist in favour of the GMOs, an adverse scientist, a representative of industry, an associative representative and a representative of the administration. During the round table devoted to the information of the consumer it was organized a debate between the various actors confronted with the implementation of the labelling of the OGM : food companies, retailing companies, administration, research and consumers associations. That devoted to the legal questions brought together lawyers and a representative of association of consumers. And the last round table tackled a transversal topic : the regulation of relations of conflict and the necessity to take into account the complex interests around the GMOs. For this round table, they invited two actors in favour of the use of GMOs and two opposed actors, as well as a representative of the administration. On the other hand, the panel did not manage, contrary to what was envisaged initially, to choose the experts.58 An additional day was necessary for this mission, the 6th June. The steering committee helped them to select experts in giving to them a list of people, who could be experts for the conference. The choice was not totally free. But the composition of the round tables for the conference rather clearly expressed the choice of members of the panel. They wanted certainly to surround themselves with the best expertise, but they also wished to organise the debate between the various actors, which had expressed their position on the topic of GMO. For the conditions of the choice of the experts, it is mixed between the wills of the members of the panel, the " address books "of the steering committee and finally, the constraints of timetable. Let us recall that the choice of the experts was carried out on June the 6 whereas the Conference took place June the 20 and 21. A member of the steering committee indicated that the panel had very clear ideas on the type of experts they wished to see: scientific side, not "Brussels experts", who are seen everywhere, but scientists close to the real field; associative side, they wanted to invite representatives of associations who played a significant role in the controversy on the GMO. The interactions between experts and candides A third weekend constituted the "conference" itself, when the panel asked their questions directly to the experts, in front of an invited audience (composed essentially of media and interested actors). Each guest thus had five minutes to expose his position. The remainder was devoted to the debates with the panel. 58

The reasons are the tiredness of the panel and its difficulties to pass from a status of ingenuous to a status of debating people.

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After 2 days of open debate, the panel worked for 24 hours to produce a report with their conclusions and recommendations, after a short introductory recall from LE DEAUT on the political importance of the conclusions to be formulated by the panel. The report was transmitted to the government and parliament after the press conference. Thanks to the expression of contradictory opinions and out stereotyped formal language of the antichambers of the techno structure, the Conference brought something different: « The citizens had the concern to have, each time, not only the point of view of the specialists in the field but to have a contradictory opinion which will make it possible to see how the various disciplines are opposed and clash and agree on such or such type of stakes.» (X, Facilitator) The interaction between experts and ingenuous during this public conference is one of the most interesting thing in this experience. The collective or social responsibility the panel assumed played a significant role in the whole of the process. The facilitator, who was very close to the panel during all this time explains it: « I.e. that people have conscience that what will be said, what will be written, the positions which are adopted, really engage them as citizens thus, in a certain way engage the Society through them." One had a very high level of conscience of the link between what one says and consequences and stakes. Really. At everyone, whatever the personal dynamics, whatever the type of development.. everyone! I am convinced, from this point of view there, it is a success insofar as all of them were aware of the collective responsibility of which he was the spokesman, by chance, on criteria…" Pointing the differences in the views not regulated between experts and to question the participants in the round table about unsolved contradictions or oppositions allowed the citizens to occupy an interesting position in these debates. The very strong and collective control of the members of the panel in the scope of the debates made it possible to block any attempt at rise in generality and any comments formulated in terms very technical. The procedure allowed to stop any attempt on top-down relations. 1.2.2. Outcomes "yes, but" - No general position The citizen's report59 can be sum up by "yes to GMO but" . They did not adopt a general position in favour of or against the use of GMOs in agriculture and food. Indeed, although this seemed to have been feared (or hoped for) by different actors, such a result is not typical of consensus conferences. And we remind that there was here no obligation to reach a consensus. A relatively large number of conferences have now been held around the world, and the result is generally, just as in France, a considered analysis of the conditions under which citizens feel the technology should be developed and controlled in order to maximise the potential societal benefits and minimise potential harmful impacts. The organisation of the

59

Available at http://www.senat.fr/opecst.

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work during the conference did not permit to attain this consensus (some lay people were pro and others against the proposition of a moratorium). Indeed the panel worked in small group about few questions, no transversal question was determined. It prevented the consensus from happening and it furthered a rather analytic approach of the question, which marginalized holistic positions on GMOs. - 3 types of recommendations The analysis of the declaration results in distinguishing 3 types of statements: üstatements and recommendations relating to the social control of GMOs use (regulation, control, information, expertise, transparency...) üstatements and recommendations relating to controversies between experts (in particular resistance to antibiotics) üstatements and recommendations relating to the importance of public search, the expertise and the responsibility in the event of problems. The French panel requested, in particular (Joly et al., 1998): "Clear, reliable and accountable" labelling policy, including the separation and traceability of GM and non-GM products throughout the food chain. The participation of representatives of society ( consumers association, environment protection associations, …) in the regulatory and control system. New laws to ensure liability and responsibility in case of harm detected in the future. Greater investment in public sector research on the ecological risks associated with GMOs. Greater state funding of public research in general in order to "guarantee its independence with regard to private sector research and the influence of multinationals". More specifically, the panel requested that antibiotic marker genes, such as the one present in the Bt176 maize, should not be used for the construction of GM plants. The report also stated that "until these conditions are satisfied, part of the panel believes that a moratorium would be advisable". This report was annexed to the report of LE DEAUT. Jean-Yves LE DEAUT60, published his recommendations in July 1998. His position was that the use of GMOs should be authorised, but that measures should be taken to improve risk evaluation procedures and information for the consumer. part of originality of these recommendations The view concerning the position of public Research was quite new : the citizens expect from the public search the creation of techniques and patents in order to protect the independence 60

socialist M.P. and President of the OPECST

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of French industry. They expect a source of independent expertise too. The opinion on the responsibility is probably most astonishing. The members of the panel reacted rather strongly when they realised that if a problem occurred, it would be difficult to turn against the person, who committed the damage. Moreover, the debates left little place to the expression of general concerns, or of the reasons for radical rejections (based on ethical considerations) or to that of the argument " feed populations of the planet " which is used by several agrochemical firms. The debate on the interest of the GMOs for French agriculture was indeed approached, in particular in some discussions between the two representatives of the agricultural trade unions. But it did not keep a long time the attention of the members of the panel. The declaration thus shows that the citizens are attentive to the potential interest of the GMOs. But their development must be strictly controlled in order to limit the potential risks (independent expertise, biovigilance). The consumers must preserve their freedom of choice, reinforced upstream by a strong public search, which is guarantor of the independence of the national choices. Lastly, the clear definition of the responsibilities for the various actors of the innovation is essential. The framing of the problem was thus rather pragmatic and agnostic because the GMOs are considered " neither goods nor bad " a priori. It is also a liberal framing: the State is present as a referee, by guaranteeing an independent expertise; the remainder is a question of choices and individual liability. The post decisions to the Citizen's Conference On 30 July 1998, the government "on the basis of these [OPECST] initiatives", announced its position, which was essentially the same as in November 199761. Government policy would be based on three key principles "strict application of the precautionary principle; a necessary vigilance for the large-scale use of GMOs; and increased transparency for consumers and citizens". Specific decisions or engagements were as follows. Some GM crops were considered to be more acceptable than others, mostly based on an assessment of their propensity to transfer their genes to surrounding wild plants. On this basis, GM maize would be authorised but not GM oilseed rape or sugar beet. Thus: The Government announced that the commercialisation of two new lines of GM maize (T25 and Mon810) would be authorised.. The government announced its intention to apply a two-year moratorium on the commercialisation and the cultivation of all GM plants, "such as oilseed rape, which present a risk of crossing with other species". GM plants containing antibiotic resistant genes would be considered on a case-by-case basis. The risk was considered to be minor, especially compared to the increase in antibiotic resistance caused by the use of antibiotics in human and veterinary medicine, and in animal feed.

61

Press Release from the Prime Minister's office dated 30/07/98.

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Measures would be taken to ensure "transparent and pertinent" information for consumers. This included a commitment to the labelling of GM food products and to setting up a national system for the "traceability" of GM plants. Biovigilance would be reinforced, and the risk evaluation procedures for GMOs would be reformed in order to increase transparency and better information. A new composition of the CGB was established on 7 July 1998, which included, for the first time: scientists with expertise in toxicology, pests, population genetics; scientists who have expressed criticisms of GMOs; and a more active NGO representative.. But the panel has also proposed more radical reform of the CGB. The Citizens recommended that a new advisory commission should be established within the CGB, which would be composed of representatives of society. This proposition suited some politicians but the issue of an articulation between such lay advisory with scientific expertise has been the core of a controversy (e.g. LE DEAUT, 1998a:95). Till today, this panel proposition has not been operationalised. Members of the government considered, that the declaration of the panel was the confirmation of its line of action. Nevertheless it did not follow all the recommendations of the panel : üthe government ignored the pressure to assure an independent and strong public research sector. üthe principle of precaution did not prevent the authorization of the maize, which has a gene of resistance to antibiotics. üthe government was quiet on two other significant points: The idea of evaluation of the socio-economic opportunity of the OGM, advanced by the panel and taken up in the report of the Office; The problem of responsibility in case of harm detected in the future is not in the agenda.

2. EVALUATION OF THIS PTA 2.1.

A public debate that was enhanced but not channeled by the Conference

2.1.1. Impacts through the media Qualitative and quantitative impact The Citizens Conference had a very strong media impact. From a quantitative point of view, first of all, the number of articles treating subject "OGM " in June 1998 was very high. It was definitely higher than at the time of the important moments of the controversy on the GMOs : the JUPPE decisions (February 1997) and Jospin (November 1997). It should be noted that the event was very strongly relayed by a larger set of Frenchnewspapers . Moreover very diverse media took an interest in it: the newsmagazines, the radio transmissions and the television news.

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. The impact of the Conference in the press was high, but the articles treated more the originality of the Conference like event than the problems raised during it. The intensity of the media cover was also due to a strong mobilization of the various actors who perceived the Conference as a major stake. The large agrochemical firms before the Conference for example had launched advertising campaigns. Let us remember also the publication of a document giving a report on search of INRA (INRA, 1998) and which was largely taken up by the "Libération" daily newspaper like a call to vigilance, or the organization of a "parallel -conference " on the GMOs by ECOROPA. This mobilization corresponds with the objective of contribution of the Conference to the enhancement and the catalysis of the public debates. One can go further in the analysis of the impact of the Conference by using a lexical analysis of the contents of the articles published at the time of the Conference62. Such an analysis must make it possible to answer two types of question: how the press took up these various elements? Did the Conference change the way the press speaks about the OGM - and if so, how? How the press spoke about the Conference of Citizens? The lexical analyse of articles published around the Conference revealed 3 themes: The first refers mainly to the Conference like event. It represents nearly 40% of the whole of the statements. The press announced and explained the organization and process of the “Conference Citoyenne” on the GMOs. When the press mentioned the Parliament, it was to indicate the place where the conference took place and not to mention the link between this event and the traditional role of the " national representation ". Secondly a much weaker theme explained the conference in its context. It pointed out the difference between Europe and the United States with regard to the use of transgenic plants. It was also stated that the Conference was organized after the government had given its "agreement" for the cultivation of the Novartis maize. The third theme was closest to the topics of the declaration of the citizens panel and raised the topics of biovigilance, risk, responsibility, traceability… Did the Conference change the way the press speaks about the GMOs? The press treated the whole topics evoked in the Conference of citizens. Does that mean that the Conference changed the way the press speaks about the GMOs? A first remark is essential. The richness of the sets of themes is not ascribable to the only direct effects of the Citizens ' Conference, but it is also connected with: The intensity of the public controversy on the GMOs since the JUPPE decision:

62

The presented results were obtained by using the software of Alceste analysis, which makes it possible to analyse whole texts and to separate the articles in classes, by the use of a downwards-hierarchical classification.

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üPartisans and opponents did exchange many arguments on the nature of the risks, their control and the interest of these techniques. The impact of the Conference was a "public confrontation" of arguments, which were very largely topical (" dans l'air du temps"). ü The effect of catalysis on the debate: this Conference was regarded as one strong moment in the controversy on the GMOs. It thus caused confrontations around the Conference and not in its centre. One can try to answer the question by comparing the image of the press during the period of the Conference with those of the former periods. First observation: among the various elements presented and discussed during the time of the Conference, little was new. For example, at the time of the call for a moratorium about commercial use of GMO in 1996, scientists tackled the question of the independence of the expertise and the organization on the Biomolecular Commission of Engineering (CGB)." However, underlined by a panel of citizens, the same argument does not have the same impact. Second observation: the various topics were not themselves new but they changed on the one hand by their contents (greater richness of terms) and on the other hand by connections, which were made between these topics. The Conference thus did not produce a transverse analysis, but did develop at least a parallel confrontation of the various problems. Thus it was possible to pass from questions in connection with the independence of farmers to those relating to the traceability of GMOs, the composition of the CGB or the role of the public laboratories. That's why we can say the Conference had an effect on the way the press speaks about the GMOs. However the Conference 's effect in the media was not long and after the appeal to the Council of State and the controversy on " Terminator ", the questions relating to the economic organization (concentration of firms, appropriation of "living being") became more and more topical whereas they had been the objects of weak attention in the Conference. About the question of the patents, never evoked in the conference, one of the members of Steering committee indicated that it was better not to tackle this topic because, taking into account the state of the European negotiations, the flexibility was very weak on this issue. The person in charge of an agricultural trade union specifies that he preferred not to speak about this issue during the Conference because he wanted to give a positive image of plant biotechnologies. He did not wish to turn the debates onto this topic, even if this one worries it a lot. This example shows how a significant topic can be dismissed during the debate although a procedure of participation is wanted to be broad and open. 2.1.2. The public debate during and into the PTA The deliberative exercise : a good surprise in the views of stakeholders The actors are convinced that the main objective of the conference (stimulating the debate) was largely reached. The Conference project was well accepted by actors of industry, some consumers associations but: Greenpeace, Ecoropa, FNE (environmental associations) were very suspicious much Chapter 3 – The french citizens

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more because of the lack of transparency around its organization than because of the conference in itself. In the interviews made before the Conference, the actors met estimated that a public debate was an interesting idea :The need of a great debate, in which would be able to take part most of the social actors, was the subject of a consensus. The feeling of limitation of the debate to the sphere of the experts has been frequently evoked, by industry people. The majority of the actors expressed a point of view close to this person at the Ministry for Agriculture « It seems to me that the first problem of the GMO, it is that it is difficult to be understood for many people. And thus, the fact that many people sought they understand and that after having understood they explained it to the others, in accessible languages, seems to be a very positive trick in itself » (X, Ministry for Agriculture) The Conference is perceived like happy surprise with regard to the way the panel was able to adopt a complex subject and to treat it with nuances. The sense of the responsibilities for these 14 citizens, brought together " by the chance of the procedures " also marked the minds. This feeling was shared unanimously, as well by the partisans as by the opponents of the GMOs. « I have found that it had been very well organized, very useful. That has shown clearly that citizens "lambda" are able to understand a topic when the preparation, the presentation are well made and finally the questions which were raised at the end by the citizen are the questions that we ourselves have and that we ourselves probably still raise. » (X, consumer association, UFC) « Thus, I find that it is very useful, that it is to (…) extend to other topics, because there are many of other topics, including topics of agronomic stakes. » (X, Scientific head, INRA) This feeling was even expressed by persons in charge of associations, which had highly criticised the Conference in the preparatory phase. « One can draw some conclusions from results of the conference of citizens. The first, it is that the citizens accepted the rules of the game, i.e. people really had the feeling that they made something of significant (…). It shows that if people are informed and that one does not take them for more idiotic than they are, there is always goodwill and in a positive synergy, they can manage to do something good. "Something good", it is to be taken with precaution (…). There were good things and least good. In fact, the conclusions were shared. One can say, at the same time associations and the industrialists played their game well» (X, environment association Ecoropa) Internal catalyse The organizations, which felt that their positions were consolidated by the panel, go further in this positive appreciation. Different interlocutors spoke about the impact of the Conference on Chapter 3 – The french citizens

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the internal dynamics in their organizations. The organization of the public discussion produced an internal debate. A member of a consumers association for example said the Conference made it possible to consolidate the internal positions on labelling and to push back internal attempts at radicalisation and globalisation of the debate, nourished by competition with associations of environmental protection about this question. In the opinion of FNSEA representatives, larger farmers union the Conference reinforced the position of a new generation, more favourable to a great public debate on agriculture development. They think the bad reputation of agriculture is a major cause of concern. The controversy on the GMOs was thus a possibility of being in contact with associations of consumers. In particular FNSEA indicated during the interviews that the conference had made it possible to make FNSEA adopt a clear position. Moreover it gave the opportunity " to understand expectations of the consumers and of people in general", to see that only a minority " rejects the principle of genetic engineering ", the others asking for only guarantees of security, information, free choice. All this allowed to orientate FNSEA in its project of creation of a non-GMOs food chain in collaboration with associations of consumers and a firm of distribution CARREFOUR. But members of the “confederation paysanne ” have not the same approach and think the conference had no interest for internal catalyse in their agricultural trade union. "the conference did bring for us anything new in comparison with others debates such as those at the TV or in the newspapers." (X, confederation paysanne) The internal catalyse was important in INRA. The conference led INRA to prepare a report, which assessed for the first time different search programmes in progress. According to the president of the INRA, the scientists who took part in the conference have now a specific legitimacy "in the house INRA" because they "answered a citizen request, that it is positive for INRA. " The impact of the participation on the different spokesmen and the experts was also underlined. Actors who were mobilized in the public Conference knew each other and had a priori a clear representation of the positions and oppositions. However some of them said that a meeting on this " scene " was a special event. The fact that the meeting was done in neutral and official place had importance because nobody had the impression to be sold to the enemy. A person of the FNSEA thinks that this confrontation "on line" obliged everyone to argue, listen, and to learn knowing each other’s. He added that since the conference people who deal with this GMOs file in their field meet regularly, whereas they never had done it before. Thus, the organization of this event produced new elements even if the contents were not very different. Several actors noted indeed that in substance, the declaration of the panel was not very different from that of the draft opinion of the National Council of Consumption (CNC), which was prepared in 1997. They recalled however that this draft opinion could not be adopted taking into account the blocking of some associations of consumers and of "strategic games" (strategic games are developed by traditional representation and consultation). The conference was an event favourable to meetings between different stakeholders ; favourable to channel and stimulate the debate, to communicate about the GMOs 'question

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(thanks to the media). It was an essay of participative technology assessment. But has the conference really changed the nature of the public debate? Was its impacts so important that it re-orientated the trajectory of the controversy and that it strongly influenced the government in its decisions? These points are developed in following sections. 2.1.3. No impacts on the trajectory of the controversy The key actors made an ambivalent evaluation of the Conference. They recognized all the quality of the work carried out by the panel of citizens, but underlined the lack of the "reappropriation"(process of feedback) of the Conference by the government and by the parliament. Such ambiguity in the definition of the aims for this Conference explains the critics, which were formulated. "I believed that the conference had to launch questions, which would be taken up by the population in general. But I had a wrong view, because the contrary happened. We had indeed the impression that this debate in conference concluded the public participation, concluded exchanges between the political power and the public." (X, Greenpeace) impacts on decision We indicated that taking into account the international constraints, , the Conference fited in a very short term calendar. LE DEAUT submitted his report to the OPECST about fifteen days only after the Citizens 's Conference. He referred to this experiment, presenting it like a " capital innovation in the development of the democratic debate on a scientific subject ". The declaration of the panel was annexed to the report LE DEAUT, report for Parliament. In the first pages of his report, the President of the OPECST has summarised the "significant aspects of the text written by the Citizens ": application of the principle of precaution, right to information and free choice for the consumer, evaluation of the possibility of the GMO's cultivation, responsibility in the event of damage, mobilization of public means for Research, European and international co-ordination to prevent a transformation of the biotechnologies 's development into an economic war or into a thing in hands of some multinational firms. But the deputy has distanced himself from the outcome of Citizens Conference, specifying that his report was based on many private hearings, meetings of public auditions and some missions abroad. It took up and detailed a lot of recommendations of the panel, with two exceptions: ü the approval of corn BT 176: DEAUTLE DEAUT indicates that the risk for health was assessed as weak by the majority of the experts, üthe topic of the responsibility was not taken up. LE DEAUT did explain his proposals for a reinforcement of public research, a reform of the expertise and European and international co-ordination. Taking into account the tension between many groups and between many countries on the various issues, his report foreshadowed the positions adopted later in the month by the government : that is necessary to fear the transgenic corn, which has a potential risk for our health. However being opposed Chapter 3 – The french citizens

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to the importation of transgenic maize would expose France to sanctions more significant than if being opposed to the cultivation of oil seed rape. The government concluded the experiment by a press conference in which Prime Minister announced many decisions, which are in line with the declaration of November 1997. The short-term decisions were in line with the report LE DEAUT; they were thus in contradiction with the panel. On the other hand, the government committed himself in long term to reinforce the biovigilance and the transparency for the consumer. When considering the degree of interaction with public decisions , it can be concluded that the Conference of citizens did not change the course of things and events. The decisions taken in July 1998 ensured continuity with those taken in November 1997 and especially aim at reinforcing the framework then established. The ideas of traceability and reform of the expertise device lie on this same scope but are new. However, they did not involve an immediate decision. We should not consider the Conference within the framework of a linear process of the decision63. …did not satisfy the key actors Those who were for or against a moratorium regarded the effect of the Conference on the social debate as being positive. But the majority of the interviewed actors think that the evaluation of this PTA as regards to the impacts on public debate is not limited to this narrow definition of the objectives of the Conference. The link with the public decision is considered with attention. Whatever the positions, the methods of translation of the recommendations into decisions were the subject of criticisms, which led to call into question the interest of the operation. « It is true that the initial reaction was that it (the conference) was useless but it was even paradoxical to require a debate and to make the contrary exactly of what was recommended. One wonders now, a year after, which was the utility of the debate on the level of decisionmakings. I believe that it was useful in a certain way in the sense that it was an element among others and it was not the only one which makes that the public more and more hear about the OGM or heard the term of OGM and raise questions about this. I believe that it was among many elements, which made emerge more and more subjects having interested the public.» (X, Greenpeace) Criticisms related mainly to the lack of implication and learning by the public authorities and the members of Parliament. These criticisms divided into various ways. Various actors, in particular the industry representatives, underlined the weak reaction of the government whose lack of reaction after the Conference does explain the weak appropriation of the contribution of the Conference.

63

Many authors developed this non-linear conception of the decisions process. See in particular: (March 1991) and (Sfez 1981).

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The effects on the public debate proved to be transitory. « I believe (...) that one can say that there was a debate. What grieves me a little, it is that after these debates, (...), it is the public authorities that must give an opinion and not shillyshally. However, I have the impression that they more shilly-shally than ever. And thus, from this point of view, in my opinion it is not very good " (X, Limagrain, co-operative of seeds) The lack of " capitalization " was also identified as a factor of criticism of the project by INRA President. " It should have been an operation which had to be followed by other operations (...) and for lack of learning, since the beginning of these questions about biotechnologies, one is losing what was positive, one is losing a little bit the positive contribution of this conference citoyenne. " (X, President, INRA) Criticisms of associations of environmental protection related to the very selective character of the decisions, which followed the Citizens Conference. Governmental official statement of July 30, 1998 : one retained especially the authorization of new transgenic corn lines and one noted the absence of measures related to the new proposals of the panel of citizen: « It is true that about the process, I do not have a lot of to say. On the other hand, there is to say more about the assessment of the impacts. One year after, (…) I find that enough striking that (…) one had noticed from the beginning that this debate appeared after significant decisions which were made, it was rather astonishing and two three weeks after the conclusions of the citizens, one authorizes again corn in contradiction with their conclusions. And, one authorized new corn with genes of resistance to antibiotics a few weeks after their recommendations.» (X, Greenpeace) "The debate in the conference was biased since the beginning of the process because of the economic interests. The decision had been already taken! And the fact that the panel 's recommandations were not taken into account was confirmed by the later decision the 3 August, which authorized transgenic maize with gene of antibiotic resistance. " (X, ECOROPA) criticisms about procedures -the training The differences in positions relate rather to the methods of organization of the Conference. The majority of the actors did not speak a priori about this question. Firms, scientists or associations of consumers consider that the experience was interesting and estimated themselves non competent; that's why some of them accepted the delegation to the Office which assumed the responsibility for its control.

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Criticisms relate to also the formation. The first weekend gave rise to explanations of the context on the evolution of agriculture and the food industry. Some people, for example in ECOROPA criticised the consensual character of this type of approach whereas they would have wished that the formation be centred on the question of the risks and gives rise to the scientists who develop critical approaches. Criticisms on the formation were due partly to the lack of information of associations. Initially, the mail, which was sent to the «trainers», stated clearly that it was asked to them, for the treated topics, to show the points that were the subject of a consensus and those, which raised problem. Secondly, the second weekend was devoted to the different stakes what stimulated much more debate and controversies. Finally the possibilities of manipulation of the panel were over-estimated. As the facilitator underlined it, the members of the panel took very fast an acute conscience of their responsibility. Since the first interventions they had adopted a very active attitude in the formation, not hesitating to stop the experts in order to pass directly to the significant questions. « Sometime I was really obliged to intervene in order to ask people stopping really to "attack" trainers and respecting them insofar as the trainers also had an extremely difficult contract. » (X, Facilitator) The organizers were themselves surprised in front of such a reactivity of the panel. One of them expressed his worry: " We do not control any more the panel! " Part of criticisms on this subject is in connection with a lack of transparency in this phase and results from the concern " of protecting the panel " and of preventing the attempts at external manipulation. Last criticism has a link with the period of the Conference. The period coincided indeed with the feast day of the music, during the world cup and one week before the holidays! These conditions of organization explain why two associations (FNE and Ecoropa) did not wish to take part in the Conference. In March 1998, 4 months before the conference ECOROPA and Greenpeace had deposited an appeal to Council of State, which led to suspend the decree of authorization for cultivation corn LT 176 in December 1999, 6 months after the conference. The Council of State accepted the request of these associations based on non-respect of the principle of precaution, taking into account an insufficiency of procedure. After this unexpected support, these associations felt they could reinforce their actions and criticisms against GMOs -the controversy about the manipulation of the panel If it turns out that the panel was manipulated, the conference would not have really stimulated the public discussion. The place and the procedures created very strong effects and the possibilities of manipulation were limited : During the first hour of the first formation, members in the panel took the trainer to task because he just before had invited them to forget their prejudices in order to have a more rational approach of the problem".

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The citizens made some criticisms about the formation close to those made by environmental associations. That's why an organizer, who was worry about it said, "The panel is out of control". An explication is possible and was given by the facilitator (i) very quickly the members of the panel were conscious of being invested of a heavy responsibility. If the concept of representation of the French people is a little theoretical, they had a precise idea of the challenge, which awaited them: after the Conference, they had to give their results to the media and would be concretely, under the glances of the public (their friends, their colleagues...); (ii) they had neither the resources of the experts (knowledge) nor of those of the traditional representatives (the mandate which makes it possible to speak on behalf of many actors). Their only resource in this operation was their capacity to carry out the debates in order to conceive an original framing which would enable them to organize the debate between the actors, experts, public decision-makers, associative representatives who were engaged in the controversy. It was at the same time very little and already much. This is why the members of the panel very quickly adopted a very vigilant attitude with regard to the possibilities of manipulation of which they could be the objects. But we have to notice that the choice of formation topics, of experts during the formation were not controlled by the panel64. The steering committee had made these choices. In this way the panel didn't react on the pre-structuring, framing of the process. This is considered as a manipulation in the view of many non governmental organizations (greenpeace, confédération paysanne principally). " Trickery was to give a formation to the 14 ingenuous into 2 week- end so that they are even more ingenuous after. The way even the debate was organized during the conference was an attempt at transgenic manipulation of the democracy!" (X, confederation paysanne) -Which role to give to the associative representatives in such a conference? For this Conference it had been noticed that they had a role only in the very last phase in order to avoid the external pressures. Had it been beneficial to associate them upstream? The advantage would have been weak because cognitive construction seems to be given by an effect of procedure. But Greenpeace, Members of FNE and of confédération paysanne have deplored their non implication and have regarded this situation as a governmental will to keep associations in the background and a voluntary lack of transparency. It caused some distrust of NGOs people interviewed before the conference. For them, this conference had no "legitimacy". "In France we have a tradition of another type of public debate. We should not have imported a conference from other countries. (…)In the Ministry for protection of environment there is a tradition of public debate, which works otherwise they would not have established the

64

The panel controlled on the other hand the choices of topics and experts for the conference .

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National Committee of public debate(NCPD)65. The debate about the canal Rhin Rhône organized by this committee showed that in a tense situation we need representatives of "sincerity, that's to say people who guarentee public opinion that they would be not manipulated in this controversy and that they would reveive contradictory arguments . And this kind of debate happens during 8 months. This allows to create something new and not a consensus, which is not the important thing. In this aspect the conference brought something new in the outcomes.(…) but the difference with a debate in the frame of NCPD is that the "société civile"(consumers associations NGOs…) receives the role the panel had in the conference…(…) because we are the actors who launch the stake on the public scene, we have probably more legitimacy in this aspect than 14 Citizens.". (X, France, Nature Environment) But we can notice that some members of consumers associations ( UFC que choisir) have not deplored the organization of the conference because "they found they have no skill for the organization of this conference. " One should not too much expect from the integration of representatives of associations in this type of conference. As actors of the controversy, they have a strategic relation with the topic, defending their positions in a strategy of acquisition and valorisation of resources. As RIP explained it : « In general, it is not realistic to expect the actors in a controversial issue to stop their strategizing, sit down together for a ‘dominance-free debate’ (Habermas) and reinsert the results in the struggle so that it will be resolved. » (Rip 1986, 362) A radical but minority criticism A position of radical criticism was expressed too. It is related to a rejection of the OGM based on an opposition of principle. Association " Some enemies of the best of the transgenic world ", which has some contact with the "Association against the Nuclear power and its World " is the most active spokesman of this current. This association crystallized a feeling of rejection of the policy of development of the OGM. Evaluating the importance of such a feeling in the public opinion is difficult. Criticism is radical insofar as the OGM are not regarded as an isolated problem, but the pathological demonstration of an economic mode of development ("source of capitalism "), which transforms all the public common good into private property or goods. The OGM are a new means of alienation. Within this framework, discussing about OGM in order to arrange the conditions of their development does not have sense. It is necessary on the contrary to use debate of which they are the objects to make a more total criticism of the conditions of their production. «The question is not to be for or against the OGM, but for or against the world, which produced them» (Tract ACNM, 30/6/99)

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Its role is to organize public debate between different stakeholders when there is a controversy about for example a governmental project : example of the project canal Rhin Rhône which opposed environmentalists, institutions, economical interests …

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But criticism does not relate only to the technology and its conditions of production. Being based on work of Jacques ELLUL (technological bluff) this association denounces also the origin of the technological totalitarianism, which consists in " substituting technical solutions for choices of a political nature ". Within this framework, the debate can only be trapped and manipulated. The position towards the Conference was thus an expression of rejection of the traditional forms of the public discussion, as a tool aiming at technology acceptability. A real debate was developed during theses two days thanks to the implication of stakeholders, media spoke a lot about this conference and about the controversy and actors expressed their position in the media. That's why we state that the PTA was an active sequence within a long term debate . But the confining of the exercise and its outcomes in an simply "annex" of an other report, its institutional defensive characteristic had prevented, since the announcement of this PTA, any transformation in the nature of the public debate, any significant impact on the evaluative trajectory of this issue. This makes thus difficult to analyse the real nature of the stakes and objectives of this PTA : Were they predetermined or ambiguous? Government has been looking for political added-value (according to a government adviser), the legitimisation of its decision about modified crops, and the channelling of the growing public debate and opposition. However the conference contributed to the modification in the expertise network. It permitted to strengthen the position of some stakeholders and to introduce a change in strategies of some others, and this evolution of the strategizing of GMOs issue by some actors made it possible few weeks and months after to change the assessment of the file GMOs and to influence the decision -making. 2.2. Possible contribution of this PTA to a new expertise network Our definition of expertise draws upon the analyses of Michel Callon66 who considers expertise as an assemblage of heterogeneous elements, a network woven between three poles: • a socio-political pole composed of human actors endowed with competencies, characterised by interests or expectations; •

a scientifico-technological pole that produces certified knowledge and artefacts;

• a regulatory pole of procedures and rules that constitute directives or recommendations for experts' work. Expertise has to establish a compromise, a regulation between demands and constraints from all three poles. To align positions, the experts move to the side where the opposition and resistance is weakest. It is impossible to know a priori what knowledge, procedures or actors and their interests will resist the most, i.e. what will be considered as hard or as flexible.

66

M. CALLON, A. RIPP, “ Humains, non-humains : morale d’une coexistence ”, Autrement, Série Sciences en société n°1, janvier 1992, p. 140-156

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Expertise is the dispositif which makes it possible to draw the graph of the resistance gradients. 67 2.2.1. strong resistance of a socio-political pole The announcement of the Citizen's Conference The announcement of the Citizen's Conference created the framework for an important "opening out" period: different policy options seemed possible and all the major stakeholders established their positions more explicitly. The announcement of the Citizen's conference broadened the new space for debate launched by the controversy, new actors also emerged and mobilized, both for and against the use of GMOs. These actors expressed themselves through the media, through NGO-led direct actions (destruction of GM fields; removal of products suspected of containing GM ingredients from supermarket shelves…), and also through the three parliamentary initiatives undertaken by the Office Parlementaire d'Evaluation des Choix Scientifiques et Technologiques (OPECST): (Private hearings of over 200 experts held in the 1997-1998, Public Hearings of experts held in May 1998, The Citizen's Conference held in June 1998) Which Mobilisation processes for which organizations?? -The Committee of Prevention and Precaution an "antichambers" of risk evaluation This committee does give Ministry for environment scientific advices. It depends on this Ministry. After the governmental decision the Committee launched an official statement, took up by the press, recalling that they had: " expressly recommended the prohibition of culture of plants containing genes of resistance to antibiotics”. -Mobilization of many political leaders. The Greens, with in particular an article in the newspaper "le Monde" signed by two “Green” deputies who denounced a decision which did not respect the Verts/PS68 agreements, which violated the principle of precaution and which carried the mark of a serious democratic deficit: But criticisms also came from socialists, who indicated publicly their criticisms on these governmental decisions. Another socialist thinks the government could wait the outcome of the PTA before he took such a decision about Maize bt. -Mobilization of associations of environmental protection. Some associations, federated by " Acting for the environment " and including Ecoropa, Greenpeace, Natural France and Environment (FNE), Nature and Progress, as well as the Confederation paysanne and the Association of the laic families launched a campaign against corn transgenic.

67

See LOLIVE, case of French Transport

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The agreement on a program signed between the Greens and the socialist Party, in January, said " that it will be proposed, at the European level, a moratorium on the use of the OGM ».

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They denounced a decision which " is against the principle of precaution ", but which testified especially to an " unacceptable strategy of accomplished fact ". They also asked a general moratorium on the transgenic plants. It is also this decision of the 27/11/97, which provided to the militants of the Confederation paysanne the opportunity of a spectacular action. At the beginning of January 1998, tens militants penetrated in the warehouses of the Novartis company in Nérac and destroyed sacks of seeds of maize bT, as a sign of protest. For the national secretary of the Confederation: « The purpose of this action was clearly to draw the attention of the public opinion. The appearance, envisaged in Agen in February, will be for the Confederation the occasion to make the lawsuit of the authorization without debate of transgenic corn». By an action certainly illegal, they questioned the legitimacy of the authorization of transgenic corn. It was the occasion for the Confederation to mobilize many supports, including that of the "UFC que choisir”(consumers), which, although rejecting the illegal action, was sensitive to the concerns, which had justified the action of the farmers. Three militants were sentenced. One of the objectives of these actions was very clearly to make pressure on the decision of the government. Indeed, the governmental declaration was not worth authorization. But the governmental line was maintained and the decrees of authorization were taken in February 1998. In few words the announcement only of the organization of the conference after the decisionmaking concerning corn BT caused the mobilization of many actors who for the majority had not enter into the controversy yet. This Pta had got a strong impact on the public debate before it had even taken place! The announcement of this conference opened a window onto participation in the national debate and controversy about GMOs. 2.2.2. towards new strategizings of GMOs issue : the conference as a stage in a long process The principal question is : how could the key actors integrate the results of the Conference in their own strategic play? On this reintegration depended the possibility the Conference had to take part in the emergence of new collective rules, although we have seen its impact on debate was not weak The Conference was only one stage in a long and complex process. But significant evolutions in the strategies of actors can be however underlined. These evolutions explain probably the change in the governmental policy during the year 1999. Procedures for framing actions : hardening of the movement against GMOs: growing power of confédération paysanne and Greenpeace -Legal procedures The "anti-GMOs" movement hardened and used the procedural pole in order to freeze unwanted decisions such as these authorizations of cultivation the maize bt. The procedural pole determines, to a large extent, the range of actions of associations and, more specifically, the combination of participation and opposition characterising it. Chapter 3 – The french citizens

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Knowledge of the procedures in which they were involved provided associations with opportunities to take legal action in Council of State. It shows the capacity associations had to act on an other public scene than this of the conference. The Council of State accepted indeed the request of Greenpeace and ECOROPA, which had deposited an appeal in March 1998 and it suspended the decree of authorization for cultivation corn LT. After this unexpected support, the associations reinforced their actions. Greenpeace published its " black List " of products GMOs, based on the answers of the producers to a questionnaire sent to Greenpeace. For the firms of food production, this action was particularly effective. As indicated it a person in charge of Nestle, " no producer can stay more few weeks on a black list, especially when it is about food for babies ". The Novartis group, although leader of vegetable biotechnologies, demanded that its company of food for babies, Gerber, would not use GMOs. -Illegal procedures In the same time the beginning of the summer 1999 was marked by a destruction campaign of tests of transgenic plants, organized by the Confederation paysanne. By these actions, the trade union carried on long series of civil disobedience, which aimed at mobilizing the public opinion. The American embargo on French products high in symbol (foie gras, Roquefort...) gave the opportunity to these peasants to make a link between the action on the OGM and a more general fight against " bad-food ". José BOVE (secretary-general of the confederation) became the hero of this fight. In this context of strong movements “anti-GMOs”, the French government decided to defend the suspension of authorizations for GMOs. At the "Council European of the environment" in June the 24, and 25 1999, France declared that it would be opposed to the authorization for new GMOs as long as would not be established a complete device of traceability and labelling. This difference between opinion of the panel and the " moratorium de facto " made one year after raised interrogations. However, when it is considered that it is an element of pressure on the European political system aiming at accelerating the implementation of labelling and traceability, we can see there an element of continuity rather than changes. In this process associations by using the pole of procedure were able to minimize the role of the conference in the controversy. These associations drew the attention and the debate on other public scenes than this of the conference. But the conference had had nevertheless an impact on the expertise network : it allowed a new "actor" to emerge. a new actor in the expertise network : the non-GMOs food chain -the new strategy of some firms like CARREFOUR in association with consumers' organizations and the first agricultural trade union FNSEA. Until there the public scene had rather been occupied by the Confederation paysanne, which discussed the problem of the GMOs to denounce the logic of the agricultural but productivist models and its harmful effects for the peasants, the environment and the consumers. Being located in a " modernistic " tradition, the FNSEA had evil to play a role in this scene. One leading agricultural professional organisation, seized up on the subject, organized consultations and published an article within the framework of the Council of French

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Agriculture (APCA 1997). By showing that associations of consumers were not basically opposed to technical progress in agriculture but asserted a greater control of the food safety and the possibility of reliable information and a free choice of the products, the Citizens Conference showed that these consumers could constitute objective allies. It made a firm of distribution named CARREFOUR aware of the economical potential, which could be revealed by creating a non-GMOs Food Chain. - An artefact for create alliance The relations on the questions of food consumption were traditionally conflicting and the attempts at coordination by social actors rather generally failed when they tried to formalize the relations. But the possibility of a co-operation on the topic of the OGM between agricultural trade union, consumers' associations and firm of distribution was all the more possible since associations of consumers was not following the Confederation paysanne in its total criticism of logic of the development of productivist agriculture. They stocked to their basic claims (control, information, and traceability), refusing the "montées en généralité" of the more critical organizations. On this favourable basis some actors decided to capitalize the effects of the Conference (as regards the meeting of stakeholders) thanks to a research project on the feasibility of a nonGMOs food chain". 34 organizations were joined together around this project. These actors managed to create a rather durable forum around a research program on the economic viability of a non-GMOs food chain. This project built after the “Conference citoyenne” received the support of the Ministry for Agriculture and the scientific support of the INRA. We call this Project of Non-GMOs Food chain a macro actor, because the network constituted around this project thanks to mobilization of allies and combination of different interests has behaviour of an actor, has its personal dynamic. It implies more than a simple coordination of actors, it associates the human entities with non-human entities (object, texts, ). The network implemented for pushing the non GMOs food strategy is an articulation between research and social processes, a socio-technical hybrid forum of more than 30 actors, discussing threshold, label…The viability of this network depends on its ability to interest the potential "user" of non-GMOs food. This network is connected to the others actors in the expertise network constructed around the controversy. This expertise network became more open : an enrolling movement made entry new actors in this network and allowed a modification of roles. The confederation paysanne has reinforced his position and the firms of distribution grew in power with their federative project of a new chain. We have seen that the conference had had only a moderate role in this evolution. Ambivalent place of the parliament The parliament played an ambivalent role. At the beginning of the process it accommodated itself very well to the conference project. But the members did not imply themselves in the Conference. The debates before the vote of LE DEAUT report were particularly poor. A discussion of the declaration of the citizens and report LE DEAUT was to be organized during the autumn 1998 in the Parliament. This discussion did have never been. Why such a

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disinterest? Two complementary reasons can be evoked. The first is due to the difficulty in inserting such an exercise in our representative democracy : "This disinterest is a problem of a lack of culture as regards the development of a participative democracy (…) The debate at the Parliament does not answer the challenges posed by the population" (X, Green Deputy) The ambivalent position of LE DEAUT is a good example. Sometimes the deputy presented the exercise as an essential tool to revitalize our democracy, sometimes as an opinion among others. It seems indeed that, for a number of deputies such an experiment is likely to call into question the operation of the democracy : « M. X, deputy(...) estimated that the suggestions of the panel were not received with enthusiasm. He judged that such a consultation, tested at the occasion of this report, should not be substituted, in the future, with the constitutional exercise of the capacity of representation held by the members of Parliament " (report of the discussions about LE DEAUT ’s work) This rather widespread way of mind did not achieve the unanimity. For example, during the same discussion : " Mr. Y (...) considered that the participative democracy, which concerned the conference citizens, made it possible to open the door of the Parliament to the citizens and to restore necessary confidence between those and the members of Parliament " ((LE DEAUT 1998), p.102 But a former member of OPECST and socialist deputy thinks that the conference would have had more impacts on the Society if one had organised at a local level": "A conference in each big city would have permitted to heighten public awareness of the debate and to spread a new culture of participative democracy. (…) Local conferences organized by local politicians would have been more effectiveness because they fit better with our culture".(X, socialist deputy)69 The second reason underlined by the same deputy is based on a pragmatic vision of the life of the Parliament. In the views of deputies and the senators, generally not very interested in science and technology the level of potential to manage to control such files is so high and the diaries are already so much overloaded that little of them agree to imply themselves. They delegate then these problems to the deputies who, by their interest or their professional past, have a good control of the file. And finally, the debate at the Parliament is hardly possible because it reproduces in its centre cleavages, which organize our Society between experts and non-experts. The creation of the OPECST, in 1982, unfortunately did not make possible to change this situation. In this case the legitimacy of the Citizens Conferences could be lived by the Parliament only like one threat. The Conference was based indeed on a legitimisation of the change and innovation by its justification in a dialogue and exchange of arguments; it was

69

A representative of ECOROPA think too that a decentralization of the conference would have had more impacts on the public debate.

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a " post-modern "exercise. The Parliament does always live with a delegation to the scientific authority and the political elite : its culture stays in a " modern " framework: The idea of this modern State was developed by WEBER Max. In such a State, deputies are used to delegating the choice of the decision about technology to the scientific experts and to the top-politicians. The exercice of a citizens conference is a break in this model and in these habits because it implies, that the scientific community justifies the differences of points of view amongst scientists and that the laycitizens take part to the evaluation of the different possible decisions concerning GMOs. The parliament could have the feeling to be dismissed of its representative function for the benefit of this panel. It seems that in the French case the parliament had some difficulties to find its role, its place in this attempt of PTA, Pta is a post-modern exercice of the democraty.

3. CONCLUSION

1 The conference : a sequence in a long socio-technical process The French experiment was seen as a success as regards to the participation of citizens, of several stakeholders, much less as regards the feedback of the exercise by the actors : 1. First of all, the Conference showed the way the " profanes " can use their capacity to deliberate on complex subjects. This obvious fact became a proof that the laymen have the "cognitive capacities to take part in the technological evaluation". They have specific competences. The laymen also underlined their capacity to carry on the debate with the experts. By doing this, the conference thus contributed to call into question the idea of an irrational public developed by a lot of scientists. That's to say the public attitude towards GM Food is not only fear and lay people can engage in a process of evaluation of a complex issue about technology : and the last sceptics have to admit this fact. In such a setting the panel has a broader frame on GMOs that experts generaly have. 2. Secondly the device, which put the «profanes» at the centre of the deliberation, changed the interactions between the various protagonists. That led, for many key actors to improve their understanding of the public debate, their understanding of the other's protagonists point of view, which lead to some changes in their strategising of the issue. From this point of view the Conference constituted an important element of social training; it stimulated in a healthy way the public discussion. But the public authorities do not have the monopoly of public space 's transformation. On the one hand, they control strong evil the debates, which take place on the media scene, and our report showed the strategies used by various social actors to occupy this scene. We also saw how social actors can choose to carry the debate on other scenes, for example the legal scene in the case of the appeal to the Council of State. But the social actors also have initiatives of creation of more or less durable forums. It is known that the social movements are frequently based on the creation of ad hoc " coordination " created around some problems. The conference constituted only a stage in an iterative and complex process. This process played a significant role in the reinforcement of ideas and proposals, which become gradually Chapter 3 – The french citizens

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a priority in the public policy : example of the "label's question" and "the free choice" which were regarded few months ago as a " lure " by many actors. We cannot affirm that conference was the only one ground of this change in expertise network, this conference was a sequence in a long socio-technical process. 2 Creation of a new deliberative process of technology assessment or a "without tomorrow" attempt? Organizing the Conference of Citizens in the context of a strong public controversy was recognizing explicitly that the form of traditional decision, founded on the legitimacy of the scientists and the political heads did not work. Two types of objectives could then be raised by the government •one stays in a model of the public education "instruction publique"in French (CALLON)70 and considers this experiment is considered as a new form of communication and education, which aims at supporting the acceptability of the OGM. This model is indeed meant for a one way communication frame, based on a clear dichotomy between experts and profanes. Thus scientific experts have to enlighten the lay people. • or the model of the public debate(CALLON) is adopted : the legitimisation of the decision is not then due to the traditional forms, but it is built in a space of deliberation between experts and profanes. Lay people are supposed to bring other elements and arguments, which allow to broaden the scope ot Technology Assessment. Thus it is a two way process and the Conference of Citizens lies for some stakeholders within the second model. Taking into account the complexity of the questions; it was necessary to take the opinion of citizens, which could clarify the public decision.. The definition of the objectives by the organizers explains it in this following passage: « In a representative democracy, the political leaders must often enlighten people, but it is necessary that they are themselves enlightened on the real consequences of the choices to be made. The conferences of consensus or citizens and the public discussion, which must be established in theory, then must precisely contribute to make these political leaders aware of the importance and complexity of some decisions, which they must take. » (X, organizer) However the same text had been the subject of another reading. Some associations and researchers underlined indeed the artificial character of the Conference: “ one organizes the public discussion after the decision of authorization for a Novartis corn cultivation in November 27, 1997 (X, researcher and member of FNE 1998)”. More basically the question of the legitimacy of this operation arose taking into account the will of channelling the public discussion. Several persons in charge of associations interpreted in this sense the text, which had announced the Conference :

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" the knowledge of the limits of the social acceptability of the innovations constitutes now a requirement from which one cannot escape any more, but the problem (…) is : how to manage to start a debate which could clarify the public opinion? The conferences of consensus cannot in themselves solve this dilemma : the opinion of fifteen citizens cannot be used in the place of the public discussion; it can however be used to start it and to launch it on healthy bases." (Government, announcement of the conference) 3 Lessons to be learned : The conference was an event favourable to meetings between different stakeholders ; favourable to channel and stimulate the debate, to communicate about the GMOs 'question (thanks to the media). It was an essay of participative technology assessment. This essay was evaluated indeed in the first reactions as positive and promising. But its impacts were not strongly important. That's why a majority of stakeholders are convinced that this positive essay did not re-orientated the trajectory of the controversy and that it did not strongly influenced the government in its decisions. The evaluation is thus divided. The encapsulating of this PTA into controlled procedures, in institutional framing (the report LE DEAUT) and in non clear stakes and purposes probably tampered long-term potential benefits on the public debate of this "positive" essay of PTA. The definition of objectives was certainly the main problem. This ambiguity in the definition and the ambivalence in the construction of a credibility around the conference had decreased the possibility of capitalizing on the effects of this experiment. Two essential preconditions for a successful pTA in France are at this time: ü the credibility in the procedures and in the organizers But the credibility must be built by all the stakeholders, it is unefficient to order the credibility. This one must be felt by all the participants and the non-participants too. In the minds of most stakeholders the concept of credibility is associate with transparency in the objectives, in the information about the process, about the choice of panel, of experts, and with the short and long-term learning (the rules for a feedback) üand the clear definition of the objective to reach with this new exercice of the democracy : which impacts on the decision process? Which role of the conference as regards public debate? (encapsulating the debate? Or broadening it?) We can add that the actors and the publics with their "cognitif references" need probably time to engage themself more actively in favour of such a radical new form of technology assessment, which contrats with the traditional technocratic and centralised French culture and Politics. The Pta is and becomes what the stakeholders decided and will decide to do with.

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BIBLIOGRAPHY Assouline. G ; Joly. PB, "biotechnologie et enjeux de société", Biofutur, sept 97 Assouline. G. "Débattons du débat", Biofutur, April 1998, p.7. Boy. D ; Donnet. K ; Roqueplo. P, "The citizens Conference on genetically modified food (France, June 21-22 1998), Paris, Cevipof, 1999. Callon. M, "Des différentes formes de Démocratie Technique", Annales des Mines, p63-72, Avril 98. Joly. P-B ; Assouline.G, Rapport DGAL, "L'innovation controversée : le débat public sur les OGM en France", janv 2000, INRA Grenoble. Joly. P.-B ; Marris. C ; Assouline. G and Lemarié. J, Quand les "candides" évaluent les OGM... Nouveau modèle de "démocratie technique" ou mise en scène du débat public ? Annales des Mines, No. 14, April 1999. Joss. S. ; Durant. J, (eds.) "Public Participation in Science: The Role of Consensus Conferences in Europe". Science Museum: London, 1995 Lascoumes. P "La scène publique, nouveau passage obligé des décisions", Annales des Mines, Responsabilité et Environnement, n°10, p51-62, 1998 Le Deaut. J.Y. "De la connaissance des gènes à leur utilisation..", Conclusions du Rapporteur. OPECST: Paris, (1998b) Maier. I "debating technologies", 1997 Mann. P, "Théorie de la mobilisation, risques et crises", séminaire du programme risques collectifs et situation de crise, Paris, CNRS, 1996. Marris. C, "Swings and roundabouts:French public policy on agricultural GMOs 1996-1999", C3ED, 1999

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Enrollment of actors

Mobilisation in -Scientific -Economic -Regulatory -Political -Media Arenas

ILLEGAL ACTION CONFERENCE

"CITIZENS

Attempt of channelling

THE GOVERNMENT

-NEW EXPERTISE PROCESS -SOCIAL LEARNING -STRATEGIZING OF ISSUE

USA

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International ARENA

PRESSURE

PUBLIC SPHERE

-"NON GMOS FOOD CHAIN PROJECT"

MEDIA-ARENA

Participation

Pressure

1999 : French turn : GVT asks for EU level moratorium on new GMOs

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Suspends the authorisation for cultivation of Bt176 maize

LEGAL ARENA

LEGAL ACTION In "Council Of State

RESISTANCE OF NGOS AND ASSOCIATIONS

The Citizens Conference in the Public Debate, graphic 1

Start of the Controversy : 1996 Authorization of GMOs maize BT 176

CHAPTER 4 GENETIC TESTING FRENCH CASE Céline Varnier, Gérald Assouline, Pierre-Benoit Joly

INTRODUCTION

The international human genome project HUGO was set up in 1986 by a group of the world's leading genome scientists to promote international collaboration within the project of sequencing the human genome. The National Center for Human Genome Research, which participates in the project was founded in 1989 in the USA and is financed by the Congress. In France the financing of the French contribution to the research is mixed : the State and a patients ' organisation, which is AFM, Myoptahy French Association, created indeed in 1990 together with the Research Centre GENETHON. This international project was aimed at furthering understanding of genetic contributions to human health and at facilitating the translation of genomics into molecular medicine. Genetics is playing an increasingly important role in the diagnosis, monitoring, and treatment of diseases. Some tests are presented as useful to clarify a diagnosis and direct a physician toward appropriate treatments, while others should allow families to avoid having children with devastating diseases or identify people at high risk for conditions that may be preventable. They target on healthy (presymptomatic) people who are identified as being at high risk because of a strong family medical history for the disorder (like Cancer). The tests give only a probability for developing the disorder. One of the most serious limitations of these susceptibility tests might be the difficulty in interpreting a positive result because some people who carry a disease-associated mutation never develop the disease. Scientists believe that these mutations may work together with other, unknown mutations or with environmental factors to cause disease. Some people, in the medical establishment or in other fields feel that uncertainties surrounding test interpretation, the current lack of available medical options for these diseases, the tests' potential for provoking anxiety, and risks for discrimination and social stigmatisation could outweigh the benefits of testing. The danger stigmatised in media is eugenics : the concept of improving mankind by depriving some people of their reproductive rights. So rapid advances in the science of genetics and its applications in medicine present new and complex ethical and policy issues for individuals and society, which may be subjected to public debate.

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1. RATIONALE

France displays some specific features, which will be dealt with in this paper. There have not been any national participatory initiatives in the field of human genetics in France. This case study will provide a broad outline of the situation in this country. On the basis of an identification of the specificity of political and regulatory background in France, we will look at arenas of public debate about genetic test issues. We have made the choice not to focus on a particular attempt of participatory experience by lack of relevant examples, but on the way actors mobilise or not on genetic test. We would like to show the arguments the actors use, when they justify a weak public debate and the weak participation of civil society and public in the assessment of human biotechnology. Some actors have a key role in the practice and assessment of this new technology. Others actors try to mobilise against some uses of genetic testing. Their vision of society is a component of the perception of risk and stake related to genetic testing they may express. What is genetic testing? Genetic testing is a complex process, and the results depend both on reliable laboratory procedures and accurate interpretation of results. Genetic tests use a variety of laboratory techniques to determine if a person has a genetic condition or disease or is likely to get the disease. Tests vary in sensitivity, that's to say ability to detect mutations or patients who have or will get the disease. Interpretation of tests results is often complex even for trained physicians and other health care specialists. When interpreting the results of any genetic test, one must take into account the probability of false positive or false negative tests results. 5 types of genetic testing need to be considered: - Carrier identification includes genetic tests used by couples whose families have a history of recessive genetic disorders and who are considering having children. Three common tests include those for cystic fibrosis, Tay-Sachs disease, and sickle-cell trait. -Prenatal Diagnosis is genetic testing of a foetus. This may occur when there is a risk of bearing a child with genes associated with mental retardation or physical deterioration. -Newborn Screening is frequently done as a preventative health measure, it may benefit the newborn when treatment is available. Phenylketonuria and congenital hypothyroidism are conditions for which testing is very often conducted. -Late-onset Disorders include adult diseases such as cancer and heart disease. These diseases are complex and have both genetic and environmental causes. Genetic tests may indicate a susceptibility or predisposition for these diseases. There are diseases caused by single genes, such as Huntington's disease, that also are seen later in life and can be tested at any time. -Identification of genetic information belonging to a specific individual has received a great deal of press coverage lately. Profiles ( "DNA fingerprints") are complied from the results of DNA testing for one or more genetic markers to identify unique characteristics of an Chapter 4 – Genetic testing

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individual. This information is currently used in legal cases of paternity and criminal investigations. It can also be used in time of major accidents, disasters, or wars to identify cadavers. We shall not speak about genetic screening, which applies to populations (as in Iceland) for data collection purposes, whereas genetic testing applies to individuals or groups of individuals.

2. METHODOLOGY

Genetic test case is based on 13 semi-conducted interviews all tape-recorded and transcribed for detailed re-examination. They were realised during the months of May and June 2000. Two of them were collective interviews. The distribution of interviewees is the following : -Members or ex-members of the Consultative National Committees of Ethic : a senator, who reported on many studies about bioethic issues ; a INRA scientist ; a Jesuit Priest, professor of biomedical ethic ; and a geneticist. -Two journalists, authors of articles dealing with bioethic issues in the daily papers “Le Monde” and “La Croix”. -a insurers' representative. -The association AFM, (patients ‘association) among whom two jurists and the director of research. -A representative of the “collectif inter-associatif pour la santé” (the inter-associations’ group for Health), who is researcher in public policy of risk. -The association GEL, “Genetic et Liberté”, (Genetic and freedom) : a scientific journalist, a biologist and another scientist who is president of this organisation. -A researcher in Law, who works on the implications of Science ‘s progresses on Law -A practitioner, who organised in January a local colloquium for practitioners about the implications of genetic test on the medical profession. -a top representative of the INRS, National Institute of Research and Security for Prevention of Labour accident and Professional diseases (telephone interview). The case leans moreover on several bibliographical resources, of which official reports from experts’ committees to the government, decrees and laws of bioethics, internal working documents of associations, press articles, and scientific journals 'articles and books on bioethic issues.

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Web research allowed us to complete our documentation on genetic test problematic and role of organisations we have studied.

3.

CONTEXT AND BACKGROUND

3.1. Legal and institutional framework 3.1.1. First stage : 1989- 1994 : preparation and vote of bioethics laws In July 1994 the parliament voted the 3 bioethics laws, which gave a legislative framing to recent developments in biology, medicine and genetics pushed by the progress in biotechnology. Since the birth of the first French test-tube baby in 1982 and the different waves of innovation throughout the 80's, media have been relating public opinion and civil society wonders and worries on genetic development. And till mid-90's the assessment and regulation of these activities lagged behind research and application of these new technologies. So the successive governments became gradually aware of the necessity of a legislative framing for all these news biotech activities and became the first actor on the public scene. That's why the government asked some experts and the CCNE, Consultative National Committee for Ethic71, to prepare reports as inputs to the parliamentary debate. From 1988 to 1994, pressures of professional organisations, some trade unions, religious protagonists, dissensions within the political class and a change of political majority delayed and modified the law project, which was finally voted in July 1994. One of these three Bioethic laws, the law 94- 654, was focused on the assisted conception, on the protection of embryos and the predictive medicine and the MPs required a review of the law no later than 5 years after the law entrying into force. This clause was justifiably inspired by the fact that the law scientific foundation is, by its very nature, in a permanent state of evolution so that it is advisable to consider possible consequences of this fluctuation on the state of law. "Face to a quick evolution of the techniques and knowledge the parliamentarians were indeed aware of the ineffectiveness of definitive and intangible laws".72 -Which specific frame for the genetic tests has been defined by the law? The DPI Biological diagnosis using cells taken from an in-vitro embryo is only authorised in exceptional circumstances as follows : A physician practising in a pluridisciplinary Antenatal Diagnosis Centre must certify that, because of the couple's family circumstances, there is a strong probability that the unborn

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CCNE is composed of scientists, persons drawn from the principal philosophies and religious faiths, people chosen because of their qualifications, competence and their interest in ethical issues.

72

F. SALAT-BAROUX, « les lois de bioéthique, Dalloz », 1998, 126 p.

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child will be affected by a particularly severe disorder, known to be incurable at the time of diagnosis. Diagnosis may not be performed before prior and precise identification has been made, in one or other parent, of the anomaly or anomalies, which are the cause of such a disorder... Diagnosis may have no other object besides seeking out this disorder and how to prevent and treat it. The predictive medicine The law indicated that, research on genetic data from someone or the identification of a person by genetic print, could only be carried out for medical and scientific purposes. Before such a study is undertaken, the person's consent must be secured. (article. L.145-15). Identification of a person using genetic prints was permitted when the process is part of a judicial enquiry or of instructions implementing a judicial procedure too. These restrictions were put by the legislator into the civil code and in the Code of public Health. The parliamentarians incriminated penally people trying to use genetic test for other purposes. The article 226.26 of the penal Code specifies the way French Law prohibits and punishes the use of predictive tests for economic or social purposes. 3.1.2. Second stage : 1994- 2000 : preparation of the review of bioethics laws and delays in the application of decrees Preparation of the review of the law The bioethic laws should have been reviewed in 1999 according to the will of the legislator. But the preparation of this review began with delay. The government asked institutional organisations to comment on those portions of the text, which would in its view require addition or revision. In this perspective the CCNE made in 1995 a recommendation to the government concerning genetic and medicine and which title was "from the prediction to the prevention". In 1998 this ethic Committee submitted a more complete report about the re-examination of the 1994 laws. Concerning the DPI the CCNE noted the apparent contradiction in the law between reference to the incurable nature of a disorder and the possibility of treating it. Concerning the genetic characterisation and genetic identification of a person the CCNE asked for more clarification of the law. Its members recommended in particular, that use of the results of a study of genetic traits for purposes other than medical or scientific, for instance for an insurance contract or for employment to be prohibited even though the tests may have been requested by the persons concerned or with their consent. The OPECST73, made a report in 1999 about the application of law No. 94-654 of 29 July 1994 concerning the donation of human body parts and products, medical assistance with reproduction, and prenatal diagnosis but nothing about the predictive medicine. The Council

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OPECST : Office parlementaire d'évaluation des choix scientifiques et technologiques (Office Parliamentary for technological choices)

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of State made some recommendations too, but only a small part of the report was focused on the predictive medicine. The difference in the suggestion compared to the 1995 view of CCNE is the idea of some flexibility for the application of genetic test in insurance field. "The council of State find coherent, that a subscriber could not hide the result of a genetic test from the insurers, if he made it voluntarily before the signing of his contract."74 The National Order of Doctors and the National Academy for Medicine made two reports, in which they focused on the utility of DPI and the necessity to broaden the using conditions of this type of genetic test. Delays of decrees The important common point between these experts committees is their attention to the delays in the decrees, which would allow a real application of the laws. In the view of CCNE for example, we can read in the chapter "genetic characteristics and genetic identification of a person that, "the text of the law gives rise to some difficulties in its interpretation and since there are no decrees of implementation, clarification is all the more necessary." The regulatory pole of procedures and rules that are constituted by directives or recommendations for experts and parliamentarians' work has been in progress since 1994 and should "control the access to information delivered by genetic test"75 but the delay in decrees marks an opacity in the reality of genetic test practices and controls. The decree for the authorisation of DPI was indeed implemented in 1998, and the first DPI was realised in Strasbourg in December 1999, that's to say 5 years after the law. The decree, which specifies the using conditions of genetic test in medical research was implemented in July 2000. These experts have emphasised that it was difficult to assess a law, which legally had not been applied yet. The consequences are that genetic testing was developed in hospital and in authorised research centres without clear guidelines and on the global functioning budgets of these public structures. Moreover genetic tests can not be commercialised or diffused by these structures until the decrees precise the rules of an eventual diffusion. 3.2. The European Context 3.2.1. The European texts and convention The Oviedo Convention76 is the first legally-binding international text designed to preserve human dignity, rights and freedoms, through a series of principles and prohibitions against the misuse of biological and medical advances. It bans all forms of discrimination based on the grounds of a person's genetic make-up and allows the carrying out of predictive genetic tests only for medical purposes. The treaty allows genetic engineering only for preventive, diagnostic or therapeutic reasons and only where it does not aim to change the genetic makeup of a person's descendants. The Convention stipulates that all patients have a right to be

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extract from the report of Council of State, 1999

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The problem of access to information has been evoked in each report since 1994

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The Oviedo Convention signed in 1997 is the Convention for the protection of Human Rights and dignity of the human being with regard to the application of biology and medicine.

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informed about their health, including the results of predictive genetic tests. The Convention recognises also the patient's right not to know. The Convention recognises the importance of promoting a public debate and consultation on these questions. 29 members and non members-State of Council of Europe have signed this Convention. Germany and England have not signed it. And only 5 countries have ratified it. The French government has many times declared that the Parliament would ratify it but this ratification is not in the official parliamentary agenda yet. And what is about the articulation of this convention with the national laws? What would be the real impact of such a convention? We can indeed notice in this convention that "any State and the European Community may, when signing this Convention or when depositing the instrument of ratification, acceptance, approval or accession, make a reservation in respect of any particular provision of the Convention to the extent that any law then in force in its territory is not in conformity with the provision." And all countries know that "any Party may at any time denounce this Convention by means of a notification addressed to the Secretary General of the Council of Europe." The restrictions to this convention are those prescribed by law in the interest of public safety, for the prevention of crime, for the protection of public health or for the protection of the rights and freedoms of others. The Universal declaration on human rights and human genome from UNESCO is another important international text. This declaration reminds that "everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics" and dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity." It reaffirms that no one shall be victim of discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity. These legally -bounding international texts testify to fears of risks for human being due to the technical progress in biotechnology. They have or will have more and more repercussions on the French debate because many actors are aware of the impact of international context on French situation as regard genetic test for example. We will develop this topic in the following chapters. 3.2.2. The surveys and eurobarometer What the surveys say about the perception European public opinion has of genetic testing? On 27 April 2000 a high level Group on biosciences was established by EU in order to examine the challenges and opportunities that the development of the life sciences raises for society. The group of scientists was demanded particularly to find means of better scientists' participation in the dialogue with society, in order to inform the public. This indicates the representation of the public's role, the EU has for an assessment of genetics developments. At the occasion of the first press conference of this group on biosciences, the preliminary results of a 1999 Eurobarometer survey of public opinion on biotechnology were presented. It was reported that Europeans felt poorly informed but was willing to learn about biotechnology. The support for different applications of biotechnology varied. There was a Chapter 4 – Genetic testing

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clear agreement that was morally acceptable to use genetic testing to detect inherited diseases and there was a more limited acceptance to transfer plant genes to other plants to obtain resistance to insects. Food production was regarded as that application of biotechnology carrying the greatest risk, whereas the detection of diseases the least. 3.3. Role of economic agents and State for the assessment of genetic testing 3.3.1. The economic and industrial agents The economic actors except the insurers are absent from discourses. The economic stake is well visible as regards to the financing of research centres, the potential market of genetic testing in Health care system, and the potential use in employment and insurance fields, but the place of pharmaceutical firms or biotechnology firms in the dynamic of this health tool is never evoked. And we can question this absence on the public scene : in the GMOs case we saw the role of Monsanto and the strategy of suppliers in the debate. No industrial agent has such a visibility in genetic testing problematic. Nevertheless we can evoke the stake of genetic testing for pharmaceutical firms and more precisely the “pharmacogenomics“ based on genetic testing. The pharmacogenomic describes the links between mutations of genes, modification of their proteic produces and clinical consequences. The knowledge of a genetic profile of each patient will generate data, which will be used for the adaptation of certain treatments and for the prescription of medicaments the best adapted. The first biochips adapted to a pharmacogenomic use were set up by the world US leader AFFYMETRIX. In France the private laboratory Biomerieux has a contract with this firm for a specifically biochips. The research institute CNRS tries to find other technique for the creation of biochips. The CEA77 and the foreign firm CISBIO International have a collaboration in the same purpose and have already found other techniques. But the pharmacogenomics raises some interrogations about its efficiency and a part of the scientific community reminds that the link between genes and clinical consequences has not been proved yet. The pharmacogenomics in the view of journalists and financial experts has its legitimacy at this time thanks to economical interests and development that it raises. The pharmaceutical firms have some difficulties because of the entry of famous molecules in the public area and the restrictions in Health budgets of all developed countries. The firms spend each year 400 milliards of dollars in research and development78 and only one or two innovative molecules are put on the market. That’s why since several years firms merge and externalise their activity of research and development to specialised firms. This new strategy is orientated towards biotechnology. The quick development of the start up and the trust of American and European stock markets in this field should accelerate the process and encourage the scientific and economic efforts for genetic testing diffusion. 3.3.2. The state The role of State in the problematic of genetic testing is determining too. Genetic testing is a health tool in progress, which probably will allow State to redefine some Health public policy and in short term to make major savings in the Health care system. The Health Ministry has 77

CEA : Centre for Atomique Energie

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Article in « Le monde diplomatique » : the human genome, a financial source for industry of medicaments

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already engaged a programme of public research in the prediction and prevention of cancer disease, with a part of this programme focused on the study of potential predictive genetic test. This interest of State in development of genetic testing79 will probably have an impact on the assessment of this new technology, and on the strategy of actors. Genetic testing development could contribute to lower health public spending but has a financial cost that State could externalise towards private sector. An annex of a report from OPECST in 1998 about genomics and informatics focused on this financing problem for new therapies. The director of the Office for Diseases Insurances drew the attention on the medical stake and financing issue of genetics for the State. But this distribution of roles between State and economic agents is a hypothesis, which has to be confirmed. At this moment the French State hesitates between two processes concerning genetics development. In the one hand the government would like to promote the creation of start-up, principally by allowing public researchers to participate in this adventure. But on the other hand the government hesitates to change the status of these civil servants. Moreover it decided to create with AFM in EVRY a big centre for sequencing genomes, with an annual budget of 80 millions Francs. But professionals are waiting still the definition of a global policy of promoting the medical French genetics, which would allow public research and the pharmaceutical industry to profit from results obtained in EVRY. Some media and professionals have already drawn the attention on the necessity to keep an efficient public research because of the stake of genomics for humanity. An article in Biofutur in 199880 reminded about genetic testing for cancers that in France tests have no economical cost-effectiveness for State, which ignores the consequences of an eventual detection for cancer diseases and for biotech firms, which have no access to the French market. The tests are done free of charge in hospitals, thanks to the support of regions, the public office dealing with French insurance and charitable associations. In an issue of Usine Nouvelle81 1999 an article was headed "the health system must adapt to genetic testing. These genetic tests, which are at the border of research and clinic, bear upon the budget of hospital and the genetic tests are non- reimbursed by the "securité sociale".82

4. CHAINS OF TRANSLATION

In this chapter the aim is to analyse the main stake issues and actors involved in the debate. The interviews were conducted more than 5 years after the vote of bioethic laws, during the period of preparation of the review of these laws but before the beginning of parliamentary debates. The chapter is organised around the topics covered by the interviews. The first section dealts with the perception and reality of the French public debate, then a section follows about the mobilisation or non mobilisation of actors on genetic test, which will be focused on the way

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One reminds the policy of systematic pre-natal detection of trisomy 21 by a genetic test since 1998 promoted by State!

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Revue BIOFUTUR, "l'irrésistible envolée des tests génétiques, p14-31, Sept 98

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Revue Usine Nouvelle(Hors série), "Ces tests qui révèlent nos maladies", Nov. 1999.

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Only the genetic test for DPI and prenatal diagnosis are reimbursed. The other genetic test will be reimbursed when the decrees will be implemented.

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actors frame the problem, the stakes and risks of genetic tests. For each of these sections the positions of the various actors are compared. This a priori static study allows firstly the understanding of the state of the public debate in France, secondly the analysis of the strategy of actors as regards genetic test. And thirdly it is a tool for the comprehension of some current actors' mobilisation process, which will be developed in these sections. 4.1. The public debate 4.1.1. Arenas and forums for debates : a limited public debate about genetic testing The public debate in public Health policy has been non-existent for a long time. The assessment of Health care system had been centralised to the top public administrator of the different institutions and of the ministries in collaboration with experts from the public Health professions. More recently the public and the civil society (patients' associations, workers trade unions…) began to take part to a kind of participatory evaluation of public Health sector through the “State general for public Health (Etats Généraux de la santé Publique)”(EGSP). In 1999 for example a forum of this EGSP was organised by the AFM and one Regional Direction of Social Affairs on the topic of rare diseases and public Health system. A citizens' jury had at this occasion formulated 26 propositions of action in favour of a Health care system amelioration, of which some claims for the development of genetic diagnosis for these rare diseases. The impact of this forum is difficult to perceive precisely but we know that a project of law about the Rights of Health care system 'users is in course of elaboration and might take into account some of propositions made during this particular forum of EGSP. The EGSP are annual event aimed at thinking about the future of our Health system, which gather in several parts of France professionals, patients, politicians and citizens and is based on local forums, conferences (…) about different public Health topics. Except these EGSP, the public debate is not a common feature of the French regulation of public Health field. And concerning genetic testing, which was tackled in the forum of EGSP dealing with rare diseases, the public debate seems to be confined to specialised and limited arenas. There were internal debates in the parliament before the vote of the bioethic law and between members of experts committees in charge by the Prime Minister of reports about the future review of the bioethic laws. These committees or other institutional organisations are the Council of State, the National Consultative Committee for Ethic, the OPECST (Parliamentary Office for Assessment of Science and Technology Policies). Two professional federative structures were consulted by the government too : the National Council of doctors and the National Academy Of Medicine. Almost all interviewees are aware of this very limited French public debate in France about genetic testing. They notice that the debate was amongst MPs and senators in the parliament 6 years ago too, when the bioethic laws were discussed. Some of them focuse on the fact that only few MPs were able to participate in the discussion, which was top-down institutionalised and confined : "only experts like MATTEI (deputy and geneticist) took part to the debate in the parliament, which was not a public debate, but an experts' debate" (X, practitioner.)

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There is a small circle of debate. The parliament, obviously, but thanks to the vote of bioethic laws. And in the parliament, there are few MPs, who took an interest in these questions of genetic test and who mastered the subject of discussion. (X, Journalist of LA Croix) "There is now in the Chamber of MPs people, who are really acquainted with the facts of the scientific data, whatever their point of view. We have MATTEI and HURIET on the other hand. They are competent; they understand very well the nature of the questions, which are raised in many fields, including in the specialised research sector. It's a clear evolution. " (X, INRA, Geneticist) The experts ' debates The role of medical and scientific people members of different "consultative experts' committees close to politicians as regards the genetic test assessment was largely evoked during the interviews. "The place of debate are in the Academy (Medicine), the scientific directions, the CCNE, the Council of State, that Prime Minister has consulted for the review of the laws. " (X, Member of CCNE, senator) "The View of CCNE about genetic test, which was transmitted to the government in a report of 1995, seems to be a good paper, but it is not understandable for everybody, so that I have the impression that the central questions like use of genetic testing in social fields are not debated in Society. I have got the last report of Council of State too.(…) But does the population use these tools (the reports)? It's not sure. " (X, Professor of biomedical Ethic) "The debate is top-down institutionalised, there are debates but only in the consultative committees". (X, INRA, geneticist) "The reports like this one from the Council of State are not public debates, they are expertise. There was a debate in the parliament in 1994, but MPs were very bad informed. No deputy had understood what a genetic test was and what the needs of insurers were." (X, researcher in law) The CCNE : a target for some public criticism Some actors are very critical as regards to the link between these experts and the politicians, that's to say between consultative views and making decision process. In France the influence of these views and recommendations of experts on the public policy is object of controversy because it partly redefines the role of each institutional organisation in the representative Chapter 4 – Genetic testing

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democracy. The role of the CCNE in the decision making process about genetic testing is particularly subject to critics. In April 1999 the specialised revue Biofutur made a number about the bioethic and criticised the national committee in this aspect. More precisely the question of the legitimacy of such a committee is often pointed out : “The national committees are problematic in their relation with the political legislative power, that’s to say producer of law imposed on the society, and in their relation to the civil society, which did not elect them” (Biofutur, April 1999). "As regards the recommendation of CCNE in its view of 1995, this text is in my opinion too abstract. (…) The savant has a bizarre role. He has the power of knowing, and the power of saying, what the society should know and do. (…) Nowadays we do not know anymore, what the savant makes: does he make his research or laws? " (…) There is an abstract debate led by geneticists, and there are parliamentarians who try to give rules to this genetic promise. There is big theoretical debate on eugenism but there is no assessment of what should be done case by case. There is no place, where geneticists, insurers and jurists could think together. (X, insurers' representative) Its responsibility referring to the public debate is quoted too: "The law of 1994 changed the mission of the CCNE. Before the laws the CCNE had to be the instigator of the public debate, had to create places for public debate, and had to give some views about some ethic problems. But the law in 1994 created a new mission for the CCNE. Since 1994 the CCNE has made the reflection, and made recommendations. This mission contributes to scrap the debate. Today the CCNE does not promote a public debate but dictates the debate." (President of Genetic and freedom) The confining of experts' debates on ethic of genetic test is criticised because these committees do not include a lot of representatives of civil society and any citizens, even if the CCNE can not be qualified of expert’s committee. Others actors think, that only parliamentarians and experts can participate in a debate, because their mission is the driving of the debate and because the treated question is too complicate for "normal" people. Some professional experts, MPs and scientists share this view. CCNE supported by authorities The authorities consider the CCNE as the organisation mastering the ethic problems of scientific progresses, which is very often consulted in order to assess the ethic, social and human implication of new technology. Its role has changed since 1994. Before 1994 the CCNE was in charge of promoting public debate, in particular about ethic, societal problems linked to the medical and scientific progresses. But since 1994 the CCNE 's mission was more focused on advising government as regards to ethic problems and risk of science and public policy. The CCNE is a kind of committee of "wise men". One does not ask them to Chapter 4 – Genetic testing

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produce top scientific knowledge but to produce rational knowledge about the given top scientific knowledge. This committee has a moral authority83. The informal debates The place of informal debates was evoked by two or three actors, these debates are information meeting about the genetic progress organised for the population by cities or universities or informal debates between professional and Patients. Other debates, which were evoked can be compared to actions of lobbying : "There are a lot of good reflections and practices thanks to debates around the presymptomatic diagnosis of the disease HUNTINGTON. These debates are 10 years old and representatives of a part of society, who were concerned by the problem, participated in the debates. It was a real dialogue between professionals and representatives of families and patients. The results of the debates materialise into intentions and actions. It seems that the equivalent is not made in the predictive medicine." (X, Professor of Biomedical Ethic) "The Professionals of Cancer disease have a common reflection for an informal guideline in their Profession as regards to genetic testing, more than a guideline, a deontology"84 (…) Sometimes cities invite me. It's interesting, I went to Argenteuil, Gif sur Yvette, it was about genetic tesing. It was information forum for idle people but there were not only idle persons, and people have asked a lot of intelligent questions. (X, Geneticist, CCNE) "As regards to the DPI, AFM85 knew that CCNE was not anymore opposed to its realisation, and the law had authorised the DPI, but there were delays in the implementation. Everybody needed this decree framing the use of DPI. That's why we have made a lobbying in favour of application of the laws." (Jurist, AFM) "I participate 2 days in week in conferences, meetings, debates about the embryos, the review of laws and genetic test, also public opinion is interested in these questions through associations, various structures. And this public is not only made of scientists, there are young and old people" (X, senator)

83

See Memmi D, "Les gardiens du corps" Editions EHESS, Oct. 1996.

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“Genetic and Cancer” is for example a structure where a multidisciplinary team tries to elaborate means of genetic test’ development, to organise collaborative studies aimed at defining and validating the best methods of medical and psychological care and at contributing to the growing of knowledge about hereditary predisposition to cancer.

85

AFM: French Association against myopathies

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The debates confined to scientific and legal experts' committees and MPs and senators experts dealt more with the framing of genetic test use than with their technical evaluation, their status or their opportunity for society. The results of these debates are recommendations to the government and to the parliament as regards to the authorisation of use of genetic test for some purposes like medical and scientific purposes and banning for social purposes. The parliament followed these recommendations and till June 2000 the experts’ committees and the legislator had let to the physicians and scientists the responsibility for the enforcement of the legal authorisation. But at the end of June 2000 a decree specified the process of implementation of this law. The others debates are difficult to approach because they are informal and carried out between medical professionals and groups of patients : in the case of the Huntington disease for example medical professionals organise debates in collaboration with patients in order to define together the rules for application of a specific test but this kind of collaborations depends on the ability of patients to structure themselves in associations and to convince professionals of the necessity of pragmatic discussions. Other types of debates, which are information debates and which do not focus on genetic testing but more on the bioethics, on the cloning and status of embryos are organised by medical and biologists universities, biomedical ethic universities. The organisers of these debates have the view to disseminate information about scientific and medical progresses in the population. The media The media publishes some information about the reports of experts' committees and have already reported on the bioethic laws. They take part principally to the controversy about the human cloning and the research on human embryo. The articles dealing with genetic test are less numerous and they are focused on the medical possibilities of this technique and on the risk of social discrimination if society would appropriate genetic test in social fields. The specialised press dealt the most with genetic testing questions. There is almost no overflowing of the debate towards civil society and public. The political agenda The question of genetic test is not on the agenda of parliamentarians and government, which have other priorities. And some official declarations from experts and politicians let us know that the review of the law will be delayed to next year and that the articles of this law concerning genetic test will almost not be reviewed and changed. 4.1.2. Two short overflowing of the debate in the last years We have to notice two short controversies that the media largely reported in press between 1993 and 1999. The first public controversy raised in 1993 before the insurers signed the moratorium about the use of genetic test. In March 1994 the French Federation of Insurance Firm86, FFSA, anticipated indeed the laws of July 1994 and signed a moratorium of 5 years on the use of genetic test for selection of people before the signing of a contract. In March 1999, two months before the end of the first moratorium, this federation renewed it for 5 another years

86

95% of insurers firms are members of the FFSA

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period. The French insurers undertook until 2004 not to take the results from a genetic research about individual characteristics into account, even if the candidate for a contract provides himself the results. The second weak and short overflowing of the debate happened in 1997 and had some repercussions on the media. Some workers' trade-unions and "médecins du travail"87 took part to a controversy in the work-scientific field. These people reproached INRS, Institute National of Research and Security for Prevention of Labour accident and Professional diseases,88 for its research programme in predictive medicine at work. The CFE-CGC and CGT (two workers trade unions) wrote to the CCNE in order to express their fears that choices in public labour health policy might lead to genetic selection and discrimination to the detriment of policy of prevention of risks and of professional diseases. But the CCNE in its response considered that scientific researches in the INRS in the view of finding genetic factories of predisposition were necessary in the interests of workers. This decision of the national Committee of Ethic ended temporarily the controversy about the possible genetic discrimination at work. We shall see in a next section that this controversy seems to be progressively re-opened by some actors of public health sector. The organisation of more and more hybrid forums dealing with this subject drew indeed our attention and led us to search in details the factors of an emergence of mobilisation attempts on this topic. The service of labour medicine in a famous hospital in Paris, la Salpêtrière, organised for example in March 2000 a seminar for "médecins du travail", specialists of genetic practices, biologists, a representative of the employers' trade union and several workers' trade-unions. This seminar dealt with the “interests and risks of genetic detection in the working world and it was indicative of the growing "médecins du travail" ‘awareness of social and ethic implication of genetic testing for their profession. 4.1.3. Reasons for a weak overflowing What factors could explain this weak mobilisation about genetic test? What are the factors of difficult emergence of a public debate? Absence of trigger and of relay in the public -no immediate stake by opposition to GMOs A factor of lack of public debate on genetic testing is quoted by almost all interviewees : There are no immediate stakes with genetic test: "A trigger is necessary, so that people become aware of something, something wrong, which directly affects them. Genetic testing stays futurist in mind. If one day there is a scandal with insurers, the press will react and publish something but we need a material, an event in order to react. The press does not make sensational for anything". (X, Journal LE MONDE)

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"Médecins du travail" are doctors who carry out the annual examination, required by law, of a company's employees. They practise industrial medicine.

88

This institute is managed by workers and employers trade-unions

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"The genetic testing is abstract. There was no big citizens' movement, which was in the street and said "no to genetic testing". Because it is too complicated, people do not feel concerned. Genetic tests are not an artefact, which could federate people. It's the big difference with GMOs. Everybody thinks of GMOs because it's food. " (X, Journal LA CROIX) The Researcher in law and Science, a practitioner and associations share the same opinion : "I think that there is no overflowing because genetic tests are not very used. The debate on GMOs began when cargos arrived. Before cargos there was no debate. And the debate on GMOs was organised by associations and farmers' trade unions. There was a classic progressive network. But in our case…Perhaps one day the associations of patients will seize the question of genetic testing." (X, Researcher in Law) "For GMOs there was a common denominator, a collective health risk, which could concern everybody with a strong relay in the media thanks to charismatic persons like José BOVE. We have not this configuration with genetic testing. " (X, Practitioner) "For GMOs, there were important factors, "our friend terminator " got a role in the trigger of the debate. Concerning genetic testing we can say that the controversy about the work of INRS was a moment of debate but very limited in time and in its effects. No, there is few mobilisation on genetic test."(…) It's as if people were waiting for something, but if nobody acts nothing will change! (X,G.E.L) The absence of scientific controversy and social "scandal" about genetic testing prevents perhaps a crystallisation on this technique. There is no alert, process of alert and no making alert people on the public scene. The media don't take this responsibility and no NGOs or association has a public visibility as regards to opposition to genetic testing. There is like a consensus through the medical and scientific communities about the usefulness of genetic testing in medical and scientific fields. Scientists and media were reminded a lot of time to be the relay in the public opinion for a public debate: "If media speak about a problem or a stake in science, there is then a debate amongst the scientific community and probably in the public. There is never a debate before things to be treated in the media. There is no anticipation and then there are some political decisions, which are the consequences of the sensational agitation made by media." (X, INRA, Geneticist) "The scientists can have the role of mediator. They have to leave sometimes their place where they produce the knowledge and find a place where they can debate with public". Chapter 4 – Genetic testing

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(X, GEL) “As representative of media I can say that we have to give information to the public.(…) We have to vulgarise the scientific debate. We can be the relay of a mobilisation, we are a kind of barometer for politicians, who assess the public opinion thanks to our articles. “ (X, Journal La CROIX) "There is a question, which scientists begin to treat. They say, that they make not effort enough in order to inform the population and they let the specialists of communication have the responsibility of information, and these journalists have not always the sufficient scientific knowledge.(…) The specialised press makes some effort. Media have the responsibility for providing elementary data at public's disposal." (X, Professor of Biomedical Ethic) Some patients' associations or medical professionals reaffirm the role of politicians as relay of debates too. "The media could be a good relay for a mobilisation, but it's not enough. We have to find a relay in the State, in a ministry. We have to find a ministry, who could have an interest to support our cause. For genetic testing it's the same thing, the framing of this health tool arises this problem!" (X, Inter-associative collective for Health) "Politicians have to take their responsibility in this story. They have to give our profession the means of participating in a reflection. " (X, practitioner, Forgeni) No culture of anticipated debate -"The debate arises always in emotion" Some actors observe this absence of trigger, which could launch a debate and mobilisation, but criticise in the same time the fact that in France debate develops only with a trigger, in emotion. It's referred to the cultural and structural specificity of France. "I find the debate in France arises from emotion, from passion, which has grown in population. It's regretful because it leads often to categorical stands, not always carefully thought-out. Emotion is not reason. The risk is that emotion catches the attention on some anomaly and hides some others. " (X, Professor of Biomedical Ethic) "One day, or another day, someone, perhaps the patients' associations will take hold of the question. One day the debate will appear as usual in France, in bad conditions, in a great hurry!" (X, Jurist) Chapter 4 – Genetic testing

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"In France the progress in science must be effective and materialised so that we measure the negative consequences" (X, Journal Le MONDE) Connected with this idea we can suppose that predictive uncertainty89 of genetic testing makes it useless for the moment. It's the point of view of Members of CCNE, and insurers ' representative. The practitioner M. X thinks that the lack of relevance of genetic test leads to this absence of debate. "Why people should discuss of a technique of which results are not sure?" These lower predictive values and the lack of anticipation of future stakes and problems in France contribute probably to this "statu quo". But the most interesting element for our study is that actors have a representation of the public debate, which is post-public controversy, post-emotion. They think a debate happens after a mobilisation and a controversy, few of them can imagine a debate by anticipating this controversy. Framing of the debate in two official forums The specific French political context might have contributed to this statu quo too. We have evoked in a preceding section that the absence of trigger and making alert people could explain the absence of public debate. But what are the reasons of absence of trigger and mobilisation? The first hypothesis is that a regulatory pole of procedures and rules is resistant enough in order to prevent an overflow of debate. The parliament voted the laws, which frame the use of genetic test in research and medical fields and ban the use in social sectors, and the CCNE "controls " the ethic of genetic test use. That's why some people connected with institutional or scientific world, think that the absence of public debate about risks of genetic testing is not surprising. "In 82/83 some firms sold genetic diagnosis and the situation as regards to insurers was less clear. Now the law regulates that. The legislative framing has blocked all discussions because the law has banned the use of genetic tests in social fields. " (X, INRA, Geneticist) "The law has a chapter called predictive medicine", and the law contains a restriction , which says that the study of genetic characteristics can be used only for medical or scientific purpose. This restriction excludes the problem of genetic test at work, and in insurance." ( X, Geneticist, CCNE) "The ethic debate is not in our competences. We speak about it but not in public. We think the CCNE and the parliamentary discussions are responsible for that. " (X,Jurist, AFM)

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There are two kinds of tests :those for relatively rare single gene defects such as Huntington's with a high predictive value that makes it almost (but not 100 percent) certain that an individual will develop the disease, and tests with lower predictive values which just show an increased risk of developing a condition.

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And the second and complementary hypothesis is that the decisions taken by the parliament or the recommendations made by the CCNE satisfy many people. There would be like a consensus about the authorisation of the use of genetic test in medical and scientific fields and the banning of it in social fields. Moreover some journalists, insurer representative and institutional persons specify that the moratorium decided in 1994 and renewed in 1999 by the insurers is a second guarantee, the laws being the first. "The insurance firms in France are not interested in genetic testing. The debate can only be theoretical because in the reality the insurers made a moratorium on these things. The word moratorium is not the right word, the insurers have engaged not to ask genetic test or results of genetic test, or to take results, which would be proposed to them, into account during 5 years. Until 2004 the question is settled". (X, Insurers 'representative) "The ethic fears of public have been joined with the action of insurers. They renewed their moratorium last year and insurers decided to do nothing in this matter!" (X, Journal LA CROIX) "The second text of insurers is more precise. In France we are protected from this particular use of genetic test. They engage not to ask the results of genetic test even if the person wants to give spontaneously her results." (X, Geneticist, CCNE) These views presuppose that legislative constraints and evaluation by experts' committees are sufficient enough to prevent the reactions, the discussions, the overflowing of the debate. We can indeed notice that, the debates of experts are based on the hypothesis of non-appropriation of a health tool by society thanks to a regulatory pole of rules, which forbids this appropriation. That's to say ones thinks that a legal banning of genetic testing in social fields will be sufficient in order to prevent the use of this tool by actors, who are not physicians or scientists. But it's not so clear! It does not take into account the ability of social actors to find ways to circumvent the law. The GMOs case showed that reactions could hit the politicians' decisions and experts' control. These regulatory rules should meet the waiting of the public opinion in order to be accepted and not raise a mobilisation. And we can suppose that the good acceptation of medical biotechnologies by European people showed by surveys for the ‘Eurobarometer’ office of the European Commission, which has focussed on the most controversial subject of human cloning, can partly explain a good acceptation in France of genetic test. GMOs suffered on the contrary of the suspicion on agro--food biotechnologies. A researcher in law and science, who made a study about test genetic and insurance and made a comparison between the French and English cases90 explained that a kind of soft general consensus is necessary for such acceptation of this statu quo.

90

Hermitte M-A ; Noiville C, "Les tests génétiques et l'assurance" centre de recherche en droit privé de l'université de Paris

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We can remind that genetic testing can in France benefit the good reputation of health biotechnologies. It was not the case of GMOs, part of agro-biotech, of which population is still very suspicious, if we look at the surveys. We can suppose that the statu quo satisfies a lot of people, which leads to a weak public debate. "It's no useful trying to develop a system of private insurance because it has less successful than in others countries. French people use Live insurance as a financial investment, not as a doubling of Social Security. And there is another specificity, which is the lack of trust in insurers that the State and insured persons have91. The State shows his mistrust in making a lot of obligatory insurances, which modify the rules of economic game. There is a weak contractual freedom. In this framework insurers have little contractual imagination. In the others countries the insured persons use very well the competition between insurers and have an interest in using genetic test in social fields. But it 's different in France. (…) And secondly the Health and the insurance become in France kind of symbolic values, it's as if insurance was a fundamental right of people, which has changed its nature. In France the problem is to find a way to reconcile the economic obligations of insurers and this new idea of insurance justice, which led to the banning of genetic test in social field. What are the economic obligations of insurers? Insurers fear that a person, who has the result of genetic test, might subscribe to a contract, because the result is bad. This is a case of anti-selection : the insured keeps for him an information useful for an opinion by the insurer about the risk. In France the good risks pay for the bad risk. But "good risk people" will have the possibilities to take insurance in UK, where the price of contract is evaluated according to an equivalence class" (X, Researcher in Law and Science) The hypothesis of this researcher is that French people are very satisfied of the legal decisions concerning the banning of the use of genetic testing in insurance field because they give a high social value and importance to the insurance, that they consider often as a social right. That's why they refuse the use of genetic testing for the selection of insured persons. But in the view of this researcher there is a possibility that this representation of a "right to insurance" hits the economic reality of the insurance world. If people, who have known bad results of a genetic test, subscribe an important live-insurance and if the insurers do not know these results, the risk to cover can not be evaluated. In the long term such situations are economically a danger for the insurance system, except if insurers raise the amounts of the prices for such contracts. In this last case, there is a possibility that in a short term people, who think they have a "good" genetic card, refuse to pay these high prices and choose to have insurance contracts in England for example, where they will have the possibilities to use their good genetic results and have special prices for their insurance contracts. It's a choice that the society should make and discuss in the view of this researcher.

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The insurers' representative said that insurers have signed this moratorium because they wanted to take into consideration the ethics worries of the population and because the results of genetic tests are not relevant.

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4.2. Stakes and risks of genetic tests: shall this technical choice predetermine social choices? How do the interviewees frame the stakes and problems of genetic test and analyse their own objectives? It is an important question in order better to understand the process of mobilisation and non-mobilisation of actors. The interviews showed that people define a socio-technical system when they frame the problem of genetic test. They define indeed in the same time the technique, the tool or its uses and the society in which it has its career. 4.2.1. The myths of genetics Some key actors define the genetic test through the economic and medical stakes of this technology. Financial interests and potential medical applications are taken for the motor of genetic test development. The human biotechnologies are indeed subject to big investments of pharmaceutical firms and research centres and the failing researches in genetic therapy have led to the promotion of applications and results in genetic testing, which represent a potential important market. The majority of members or ex members of CCNE, the insurers and associations' representatives think that these stakes are determining for the development of genetic testing without controversy. Moreover the top medical and genetic scientific communities are reproached for developing a myth of genetics, a myth of potential success and curative progresses in order to receive more money from State and firms for their researches. The genetic test is defined as a pretext for money, a part of the myth about genetics, which misleads the society and which participates in the absence of reflection about the philosophic, psychological, social risks of genetic test use. "There is a risk of the myth of "all genetics", which is the proof of a lack of critical mind about the knowledge we have created for years! Scientists, mostly in USA have developed this myth, in order to receive more money for their researches. There was a scientific stake at the beginning of the researches but very fast the political stake has grown, because scientists had to convince politicians of the necessity to promote genetics, and it contributed to diffuse in population a mythic conception of genetics : the conception of a man programmed by his genes. And at a medical level, the risk is strong that technique and practices developed in this sector might be not enough submitted to reflection and critics, might be not enough orientated towards the good of persons." (X, Professor of biomedical ethic) "The economic stake! It's evidence that molecular biologists believe they are masters of the world. The start-up, it's wonderful, the genetic therapy is wonderful, but the medical effective progresses are null. (…) That's why firms developed genetic testing, it was the only ones applications they found after years of researches and investments. (…) there is a misuse of confidence. People think everybody will be cured, but it 's not true!" (X, Geneticist and member of CCNE) "Research laboratories need to finance their researches, there is a genetic pretext in order to receive money for the researches. The consequences for the insurance firms Chapter 4 – Genetic testing

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are that they are in an abstract debate.(…)the genetic tests have no relevance, we can not discuss about them!" (X, insurers' representative) "All the scientists have taken a stand in favour of the banning of the use of genetic testing by insurers and employers. Why? Because they are convinced, rightly or wrongly, that if there is a use by insurers, the public will get it in for them and that it would be bad for the public image of genetics. This ground is a bad ground, which is only corporatist." (X, researcher in law and science) The religious and ethic experts The consequences of this "mythic conception" of genetic test are in the view of M. X, professor of biomedical ethic, a risk that genetic testing might be used because they exist, without ethic reflection about individual freedom of people submitted to distress and anxiety, about eugenic issue in the prenatal diagnosis. That's why this Professor, who is member of some ethic committees92, wrote last year for the French Episcopate a book headed "rise of genetics and human dignity ", which was aimed at drawing the attention on these risks linked to development of genetics. He organised 3 years ago a colloquium about genetic testing. This colloquium was aimed at launching a reflection about the risks and hopes of genetic testing. It gathered 150 persons, half with health professionals, some students in medicine and various professionals. The reflection of French Episcopate focuses on the economic and scientific stakes of genetic testing evoked above, which can lead to eugenism and discrimination against individuals with genetic predisposition to disease. An other member of CCNE, a geneticist, who considers that the status of information test may give is a problem too93, does not think that genetic testing will be generalised because he is sure that the lack of certainty in the predictive aspect will discourage people to use them. "The tests are in many cases probabilistic and do not take the environmental and random factors into account" The insurers The insurers’ representative thinks that the consequences of this mythic representation of genetic testing for Society will not lead to the use of genetic testing in many fields because of genetic test particularities, which are their costs and their weak predictive quality. The value accorded to informed consent94, and specifically in insurance, is particularly spread in France, that's why he thinks insurers do not mobilise in favour of genetic test and will never ask the use of genetic testing before the signing of a contract.

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He was member of the CCNE from 1988 to 90

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"What becomes the freedom of a woman, who learns that she has a big probability to develop a cancer of chest and that the means of prevention are weak, or not existent?"

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Obtaining permission to do genetic testing is informed consent.

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"The insurers have signed a moratorium in order to take into consideration ethical worries of the civil society, but there is no problem of genetic test." (X, insurers representative) 4.2.2. Framing of a health tool The genetic test is perceived as a health tool, which can not be appropriated by social actors because a procedural legal pole bans the use of genetic test in social fields like insurance and employment. The journalist of LACROIX and some members of CCNE, the geneticist member since 1983 and a senator believe social risk is weak because it is regulated by the legislative rules and the moratorium of insurers. The law authorises the use of genetic tests in medical and scientific fields. So the mobilisation of actors like the members of CCNE, manifests itself only in their claim for a quick implementation of decrees, which can materialise the conditions of authorisations for using genetic test in medical and scientific fields, which can give clear instructions to scientists and physicians referring to their use of genetic testing. The failed attempt of local PTA The strong influence of law and of State in the health system is denounced by a practitioner, member of an association for the formation of "Isère95" practitioners, FORGENI. Doc. X FORGENI president organised with members of his association a colloquium in January in order to make Isère practitioners aware of the problems of genetic testing and in order to make them define a strategic stand. He invited one professor of ethic and 2 geneticists in order to help practitioners to discuss the problem. He wanted practitioners to become aware of the medical stakes but also of the economic, scientific and social. It should allow them to understand the consequences of genetic testing for their profession and their relation with the patients. M. X FORGENI criticises indeed the passive policy of eugenism in the development of prenatal genetic tests. The practitioners have by the law the possibility for example to propose a test for the detection of trisomy 21 in a fœtus. They are not obliged to make it but the medico-legal obligation is an obligation of means, which urges the physicians to use all health tools. And the practitioners during this colloquium have only asked geneticists for recommendations in the view of making the test, by proposing to the patients the best solution referring to the use of genetic test for T21. There was almost no debate about the place of the profession in a potential public debate about genetic testing. Could it have been different? M. X FORGENI is disappointed but not totally astonished by the results of his colloquium : "the grounds are linked to the particular stakes of genetic testing and to the problems of Health Care system in France": "The health system is centralised, there is no top-down circulation of information, no implication of physicians in the ethic debates, although they are the closest to patients

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Isère : part of the region « Rhone-Alpes »

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and population. They are not used to discuss the social and ethic implications of a health tool, they are used to apply this tool following top instructions coming from the law and are lost if they don't receive instructions. They are in the core of the problematic, they have the central role and would have all the legitimacy in order to mobilise but they can't because of the French health system. It's worrying! " At the same time as this practitioner defines the risks and medical stakes of genetic test, he defines his representation of society, which might justify in his view the lack of mobilisation of practitioners as regards genetic test. "Practitioners do not mobilise. The question is the following : are the practitioners able to stand back from their practice? And that is called "ethic and deontology". I think a lot of practitioners do not stand back from their profession and mission. The grounds are various and sometimes unknown." (X, practitioner, association Forgeni) The role of politicians In this framing of the genetic test use, the politicians appear as key actors. Actors mostly from NGOs, who are sceptical about the ability of the law to prevent the social “misuse” of genetic test, claim for more implication of politicians in the framing of genetic testing. They have a representation of genetic test focused on its potential medical application and are worried about the possible appropriation by social actors of this tool. They think the existing procedural and legislative rules are insufficient, but hope that politicians will “take their responsibility”: “In the ethic debate, AFM considers that its participation is not in its competences, and we let always the institutions in charge of these debates discuss these things, like the parliamentary discussions.(…)We recognize our limits, we can make some lobbying but we can’t have public and official position, it might chock our public and our public supports our research programmes by their donations”(X, Jurist,AFM) “The problem of parliamentarians is that the law has not distance enough and as the decrees are not implemented the assessment of the law is impossible, and secondly France has to ratify the Oviedo convention and the question is : how to translate in legislative ways principles, which are vague?(…)The law is insufficient for prevent uses in employment (…)"I am in favour of the rehabilitation of the parliament. He is responsible for this Society ' stake, for this ethic debate” (X,GEL) Actors, who claim for a large discussion about genetic testing, believe the law must only be a part of a framing process. This Professor of Biomedical Ethic thinks the law can allow a practice, like the DPI but it's inefficient in order to think about the validity and opportunity of genetic test in general. Media, specialised and generalist, the politicians are taken for able to develop the reflection. Politicians are considered as responsible for assuring the efficiency and control of genetic testing. The key role of medical professionals are often evoked too. People think the problem may be the loss of freedom of physicians, who live in the fear of not having made the maximum for the patients and who fear the reproach of inaction. Chapter 4 – Genetic testing

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“For example they fear the legal consequences if they do not propose the test against trisomy 21. Doctors probably feel obliged to use genetic tests, it's a problem! "The society must find a way in order to reach a "reasonable" practice of genetic testing. " (X, Professor of Biomedical Ethic) This professor of biomedical ethic has a representation of society, which should promote a collective reflection between medical professions and civil society. He does not neglect the possible benefits of genetic testing at work and in the insurance but draws the attention upon the risk of discrimination. The insurers’ representative expects too the politicians to launch a debate with the insurance profession in order to anticipate a possibility of using in a passive way the results of genetic testing. Associations' representative would like to be associated to the public decision too. So the positions are ambiguous because actors criticise more or less the current legal dispositions, wait for political actions for the framing of genetic test (insurers unofficially claim flexibility and associations claim more rigidity in the legislative rules) and paradoxally they aspire to be consulted (and are convinced that a consultative and negotiating solution would be more efficient). 4.2.3. Career of a health tool The researcher in law is convinced that the technical choice of genetic testing will predetermine the societal choice, in other words the genetic test might have its own career independently of attempt of framing and control: "All the scientists have taken a stand in favour of a banning of the use of genetic tests by insurers and employers. Why? Because they are convinced, rightly or wrongly, that if there is a use by insurers, the public will get it in for them and that it would be bad for the public image of genetics. This ground is a bad ground, which is only corporatist. The second reason, which has a link with the first, is that genetics belongs to them, and the social use of genetics they don't give a damn about it. They don't want to assume the consequences of tools they have launched in the society. But as soon as a tool is launched, the society uses it as it thinks the best. They refuse to accept that, because when they will recognise this rule, they will understand in the same time that this rule will limit their freedom of launching these tools. " Conceived in a logic of biological knowledge and medical application, the tests arise in the same time a demand of use in others social spaces. It’s a normal phenomenon of sociology, which refers to the activities of mobilisation created by socio-technical objects and their ability to create new networks and to progress inside them. The sociology of science, which stresses the role of users, focuses on the social dynamic of technical object, which is negotiated according to appropriation contexts, mobilised actors and their objectives. 96

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AKRICH M, “comment décrire les objets techniques, in technique et culture, 9 1987

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But M. LASCOUMES97 reminds in a recent article about the use of HIV test that this negotiation of the dynamic of a Health tool can be stabilised with a double process :a system of measurement, which assures the reliability of objects and a system of formalised rules, which can be professional agreement of practices or rules of State. Now in the case of genetic testing the system of measurement does not exist yet (except for the realisation of DPI) and the rules are not implemented and can still change. We have seen in the chapter 4 that the Council of State in a very recent report for the government has suggested to put a flexibility in the law concerning insurance and genetic testing "The council of State find coherent, that a subscriber could not hide the result of a genetic test to the insurers, if he made it voluntarily before the signing of his contract." This suggestion was not known by a majority of interviewees, and particularly people (CCNE, Journalists), who were very confident in the present legislative rules as regards to the framing of the dynamic of this health tool. Some associations were not aware of this proposition of flexibility either. The reaction of insurers' representative to this proposition is very interesting because insurers affirm that genetic test is not a stake for insurers but the interviewee adds that the report of Council of State allows to give a casuistic "to this problem of genetic testing”. And he admits that he would be in favour of an obligation for the candidate to reveal the results of a genetic test if he has realised it before the signing of a contract. The insurers' representative refers to the results of the English 1997 negotiation, which led to this acceptation of passive use of genetic tests in England in collaboration with medical profession. In 1997 the English insurers decided indeed to establish a Code of Practice concerning genetic testing. They decided that a candidate for a contract couldn't be obliged to do a genetic test, but if he detained the results of genetic test he could and must give them to the insurers, because the candidate has obligation to give all information in the Health questionnaire of insurers. This code was established after that a "citizens’ jury" had been organised about the question of insurance and genetic testing. We can remind that in England no legislative text, no law, frames the use of genetic test in medical, scientific or social fields. So the issue of genetic test uses in insurance field is not settled and some actors demand the right of using these genetic tests for their own purposes, in particular for a better selection and price fixing of risks. Could this Council of State ‘s proposition of flexibility in rules lead to reaction and mobilisation? An inter-associations’ group for Health, made up of various associations of patients or /and handicapped people, is already working on the access to insurance for aggravated risk people. The president, M. X, researcher in public policy explains that this collective actually mobilises in order to make some lobbying towards government, which prepares a law, on the reinforcement of rights of Health System 's users. This law will contain a chapter about the

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Crespin R ; Lascoumes P, "Régulation de la carrière d'un instrument de santé" in Revue de sociologie du travail, 1er trimestre 2000

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access to insurance for aggravated risk people and the collective is working on some propositions. In a report of the collective, we can read that genetic testing is a future social risk of discrimination for these patients. But M. X didn't know that the Council of State had made a recommendation of more flexibility for the next bioethic law on the subject insurance and genetic testing but he comments it by this way : "This proposition of the Council of State supported by insurers is the best argument in order not to appear as a discriminator. Insurers claim the right to ask the result of a test, it's the same thing! I find it shocking! The question is : who do the politicians want to protect? The interest of Health users ? No, it's pure discrimination, it's more than selection. (…) We ask in our collective for more precision from insurers about their criteria of selection for insurance contract. But they want to have freedom without constraint, and genetic test could help them in this way" M. X. thinks that the hierarchy of stakes should be firstly health and prevention, then therapy, but he is sure that the third stake, the social stake, will precede the others (problem of individual freedom : what will people do of such information?), and then the fourth stake, which is the technical stake, in the reality very quickly will become the first : "It's true that we can observe that as soon as a tool is produced and available, it has its own career, and if we don't anticipate its appropriations and particular contexts of circulation, it's logic that it becomes monopolised by insurers and employers. The technique stake will reinforce the possibility of making social selection. And the law is insufficient because it does not specify that it makes null and avoid another law of the penal code, which allows insurers to make discrimination. (…) and if you look at the moratorium, it's only about the bioethic law. Nothing today prevents insurers from demanding results of a genetic test. " This collective' representative has a very clear representation of the risk that non stabilised rules and absence of measurement system for the reliability of genetic testing might lead to a “hegemony” of technical stake, which would make genetic testing progress in social network. But it seems that a mobilisation of patients' associations against the risk of social appropriation of genetic testing would be problematic. In the medical network the associations have a key role as regards to the development and financing of genetic tests but in social network the genetic testing could allow a discrimination of patients. The associations seem not to have a representation of genetic testing as a socio-technical object but as a neutral artefact, which does not interact with people using it. It could explain why these associations think a mobilisation against social use of genetic tests might prejudice medical use of this health tool. A Jurist in AFM for example reminds that associations of patients have been the lobbyists for the development of genetic testing in medical and scientific sectors. If they mobilise against social use of genetic testing they fear a curbing on research and medical progress in this field: "If there is no relay in the society, there is no debate. But who is organised and can mobilise? Which structure could mobilise on genetic testing? The patients' associations! But, we can not mobilise against genetic testing because it's a risk of provoking a curbing of the research and medical application of genetic testing! And there is no association of non-ill persons. In the Chapter 4 – Genetic testing

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GMOS debate, the GMOs hit the strategies of Confédération Paysanne, Consumers association, environmentalist Association! Genetic testing does not hit totally the strategy of a lot of structured organisations, we need genetic testing." (X, Jurist,AFM) GEL an association of geneticists and physicians has the same lecture of the difficult position of patients’ associations: "The risk is collective, not individual. People can have to win something with genetic test at an individually level. The only ones, who are worried, are the handicapped persons and patients. (…)But these same people have a lot of to win with the development of genetic testing in medical applications. And in the medical and research sectors a strong lobby in favour of genetic testing exists." (X, G.E.L) This same association tries to mobilize against genetic testing in employment field. 4.2.4. The role of GEL in the mobilisation in progress Since the controversy in 1997 about researches of INRS the issue of genetic testing in employment has appeared as settled and in his recommendations in 1995 the CCNE reaffirmed the sufficiency of the law as regards to the banning of genetic testing in employment. But in the report of 1999 the Council of State noticed that the banning of genetic testing in employment is in principle clear but in the reality could be limited by individuals: “Persons knowing the positive result of a test could be tempted to use it face to a potential employer or a potential insurer. " (Council of State, 1999). GEL is aware of this social risk linked to the development of genetic testing and is aware of this absence of rules, which could stabilise the “carrier” of genetic testing and absence of clear measurement of genetic testing reliability, that’s whey GEL is mobilising. The association "genetic and freedom" was created in 1989 by a group of biologists, who wanted to make their situation of scientists benefiting people. They wanted to make their knowledge available to people in order to think together about the applications and stakes of techniques scientists contribute to develop by genetics. Genetics and Freedom fights in priority eugenism and tries to promote a democratic reflection about the implications for humans of the researches in genetics. GEL would like that acquisition and use of genetic information concerning people might be carried out under’ strict conditions defined by law and for purposes exclusively therapeutic. The president of the association thinks that the risk of lost of individual freedom related to information given by predictive test is important. But the most important risk is the genetic discrimination in social field, which could be favoured by the economic, industrial issues. It raises the problem of the status of genetic testing and of the efficiency of legal framing:

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"What would become the information of genetic test? Which relevance genetic tests have? " The position of the association is that it's not normal that no institution validates the test. Genetic tests are neither biological material nor medicaments, nobody is in charge of saying the interest in terms of diagnosis and in terms of therapy. Only the places where these genetic tests can be carried out and are regulated. (…) Secondly the bans for the work are made but we showed and the Council of state demonstrated it, that the banning is in principle clear but in the fact can be limited : persons knowing the positive result of a test could be tempted to use it with a potential employer or a potential insurer. The definition of genetic testing by GEL focuses on its potential appropriation by actors, who would be interested in the reinforcing of selection criteria for employment beyond the present professional capacity. Moreover the association is worried about the ambiguity of national and European legal texts and about their ability to prevent misuses : "The first ambiguity is the declaration on human rights and human genome from UNESCO, which refers to the possibility for States of using data of genetic test for imperious grounds. So the text is not sufficient. The only one that is a bit more constraining is the convention of OVIEDO, but the big countries did not ratify it. And if France ratifies the convention the question will be : how to translate in legislative way some principles, which are very vague?" The association refers to the controversy with INRS, which carries out some researches about genetic testing at work, they consider them as dangerous for the future employment policy and the association refers to the View of CCNE, who recommends the prohibition of use of genetic testing at work with the following exception very criticised by the association : "The use of genetic testing in occupational medicine must be exceptional and rigorously restricted to cases on limited list for which the risk for the individual is sufficiently established and cannot be removed by changes in the environment of labour. " (View 1995 of CCNE) The association specifies that there is no scientific relevance for the use of genetic testing by workers. "That's why INRS research project seems dangerous and useless. The genetic factor is only a factor of susceptibility and sensitivity. A genetic exam by a worker will not lead to a diagnosis of certainty but only to a probabilistic evaluation. "

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Enrolment of others actors by GEL: towards a public debate? The association participated in 1998 in the redaction of a special issue of a review and at the same period members of this association thought about their activity and their future action. They met some practitioners and physicians trade unions, which became members of the association and they discussed together a collaboration. "The practitioners came and met us. They were in distress towards genetic and they felt in a bizarre situation, where the reference of doctor to patient was beginning to fail because doctors were not able anymore to answer the patients ' questions. They saw that patients directly were going to the specialists. At this moment our collaboration began. " But the association crossed another level of mobilisation with the physicians in industrial medicine. Their common reflection about the risks and stakes of genetic testing led them to prepare a common proposition of modification of the law, which will be sent to the Prime Minister in few weeks. "The origin of our project is the comprehension of insufficiency of law for the use of genetic testing at work. Secondly there was a reflection at a European level and the syndicate of "médecins du travail" member of GEL went to a meeting in order to present our common reflection and views (…)So it is a particular way of action. The propositions should come from someone, so the idea is to create rapidly a collective. It can be considered as lobbying, the idea is to convince the politicians. That's why we are finalising a project of proposition for a modification of The law, that we are making signed by a lot of associations and unions." The mobilisation and the choice of action is aimed at reinforcing and stabilising the legislative rules. The process of enrolment of actors is succeeding because GEL is persuading many associations to sign the letter. "There are the UNS, "union nationale des syndicats indépendants" (national union of independent syndicate), the association of the law L611-10, which gathers inspectors of the industrial medicine and fights against the use of genetic testing at work, then follow the SNTRS-CGT, GEL, FNATH, federation of handicapped workers, and the SNPMT, national professional union of "médecins du travail". The claims in the project have more or less the support from non-medical workers trade unions too. During the seminar in hospital Salpétrière" the 30 and 31 march 2000, the European confederation of trade unions or the CGT have expressed the same worries about genetic testing developments. In 1998 CFDT had in its review published an issue about genetic development, which focused on risks and stake of genetics. This project of propositions for the Prime Minister and the mobilisation are aimed at catching the attention of politicians on the necessity of reinforcement of the law as regards to the banning of discrimination in social fields : the association ' members think the only one way to prevent the social use of a health tool is the legislative restrictions. Chapter 4 – Genetic testing

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This mobilisation shows that the scientific and medical worlds are not homogenous. We have seen that some scientists and practitioners are confident in the ability of the expertise procedure and legislative rules to assess genetic testing and frame its use. They have some difficulties to think of the ethic and social implications of genetic testing. But the action of GEL and of these associations of "médecins du travail" shows professional medical and scientific people, who want to break the present statu quo and anticipate the possibilities of appropriation of a socio-technical object by Society. What will be the impacts of this mobilisation on a public debate on genetic testing? On public decision? On the others actors concerned by this technique? Could this mobilisation be a trigger for a debate? Will it be relayed in the media? It tackles probably the question of the role of the public in a potential debate. 5. ANALYSIS 5.1. -The role of the public The representation that actors have from the public is very interesting as regards to the questioning of our project : Firstly the topic of genetic testing seems to be too complicated for the public in general in the view of the politicians : "These problems are so complex questions! I participate in meetings and it 's important that experts accept to go into these meetings in order to explain their work in a comprehensible language. These meetings are not experts ' debates. It's meetings for information of the public" (X, senator) Secondly genetic testing does not concern everybody, which could explain the disinterest of public opinion: "The GMOs concerned the consumer, that's to say everybody. Genetic testing does not concern everybody. People, who feel concerned by it, have grounds basing on individual part of the population aware of the stake, have interrogations about the genetic applications in labour medicine and insurance. It's true that genetic testing can arise the interest of a lot of people but not so many people as consumers in the GMOs situation!" (X, senator) "The debate has "overflowed" towards the population in the GMOs case because everybody was concerned by what they eat and what they had in their plate. In the medical genetic we are in a system where not enough people feel in danger individually towards what could happen. The debate is not towards population because we are in a process in which the individual interest can hit against the collective interests" (X, practitioner) Chapter 4 – Genetic testing

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But the majority of interviewees think that the population can not be interested in a topic if there is no relay by the media and by some spokespersons of the public. The specialised media and the more generalist media should be the relay for a debate in the point of view of a majority of actors. The journalists think that media could be a relay and must have the role to favour access to information about stakes and problems of a technique for the public but they add that at the present media do not contribute to a debate about genetic testing "because there is no mobilisation they could relay, no controversy they could nourish"(Journalist, Le MONDE). 5.2. A PTA about genetic testing : benefits and limits The actors we met expressed their mind about the opportunity of a French PTA on genetic testing. We have asked them what a PTA could contribute to the public debate and to the general assessment of genetic testing? They almost all evoked the risk of political manipulation of the public by politicians, which is linked to the organisation of a PTA. The journalists and associations focused on this point : "If it's not a pretext for making accept decisions which serve others interest than those of citizens , if it's not a demagogic exercise, it's a good idea, because it can encourage debate, discussion. But we have to be careful to the conditions of organisation" (X, Journalist LE MONDE) "If it is not translated into actions, it's not worthwhile, it's a trickery!" (X, scientific journalist, member of GEL) Only the insurers ' representative, the scientist of INRA and the senator specified that it is not the role of citizens to participate in such a debate and technology assessment. The insurers ' representative thinks a pragmatic discussion between professionals, patients and politicians could be more interesting ; the senator does not see the articulation between the PTA and the parliament and the INRA scientist wonders if a citizens’ conference is appropriate for defining the orientation of science and research. The others actors find in general that a conference of consensus could be a good idea and that citizens are able to discuss technical problems and choices of society: "I have more confidence in citizens ' conference than in MPs in order to discuss this topic, (…) Genetic tests are a topic less complicated than the one of GMOs" (X, researcher in law) "A PTA about genetic testing would be perhaps more difficult than this one about GMOs because questions refer to problems of collective values on which everybody has his mind. It's no immediate personal and direct repercussions. The difficulty is more in this aspect than in technical complexity of genetic test. It's more difficult to debate test than GMOs not for technical grounds but for grounds of politic, ethic and social complexity.(…) Politicians think perhaps the public is not ready to do this! " (X, GEL) Chapter 4 – Genetic testing

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"Having an institution, which speaks about questions of Mister "everybody" would have interest. It could give worthwhile indications to a government, to politicians. But we should look at the interests and limits of the first consensus conference on GMOs…" (X,Professor of Biomedical Ethic) " The CCNE has not to say the ethic, just as the scientists have not to say the right of social appropriation of the technique(…) the politicians must decide of this appropriation.(…) but they have some difficulties to associate the citizens to their decisions" (X, GEL) Tthe legislator must settle this ethic debate(…) but the citizens have a certain expertise too, a certain know-how or ability to tell things to experts (X,Jurist, AFM) Other actors like a geneticist in INRA or the researcher in law add that a PTA would be interesting but too premature : "I wonder if a PTA would not be too premature, because apparently the topic does not interest people and I don't know if insurers are mature enough to do that. What surprised me when I discussed with English insurers is that they mastered their file, whereas I have not felt that by the French insurers. The degree of maturity of English organizers (of the English citizens' jury) appears superior to the French situation. " (X, researcher in law and science) The representation of the role of the public is double. In one hand the public is represented as actor, who is able to participate in PTA for example and in other hand he is defined as neutral entity, who can be influenced and who is not ready to take part to public discussions, who needs to receive information and education about science issue. Very often people explain indeed that a public debate would not be interesting at the present because of the “immaturity “of the issue or of actors and public, but they precise almost paradoxally that actors and the public are sensitive enough in order not to use genetic testing because of the lack of precision in the results. “ Scientists and physicians have only to use noble terms in order to make the myth durable and to make people accepting medical practices : if we speak of predictive medicine or genetic diagnosis it's noble. It can hide some problems, but people think medicine is good for people,! GMO come under phantasm and manipulation. With GMOs, we manipulate vegetal, then the living being. Physicians have understood this problem very well. In the 80's in front of the emotion raised by the genetic manipulations on human, they invented the expression totally correct of genetic therapy! The manipulation of human is horrible, the genetic therapy is noble, but it's the same thing!(…) Emotion is then captive of language. The media have many time spoken of experimental colza fields, which have been destroyed by opponents to GMOs, but the multiplication of genetic test thanks to a biotech firm's influence on medical profession would not raise the same emotion” (X, Professor of biomedical Ethic). Chapter 4 – Genetic testing

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The senator refers to the two controversies about INRS’ work and insurance moratorium as to the lack of information and bad system of communication with the public. The journalist of Le Monde thinks the ethic debate is complicated to organise because questions of eugenics are too complicated. The AFM representatives would like to launch an internal debate in the association about genetic test with some guests like insurers but they fear that people might be not mature for such a concrete debate.

CONCLUSION AND LESSONS TO BE LEARNT

In the present study we tried to make a clear characterisation of the French genetic testing situation : the different actors' strategies since 1994, the evolution of the legal framework, the mapping of the representation on some stakes and risks linked to genetic test. The public debate which erupted in 1994 mostly in specialised arenas like Ethic Council, parliament commissions, specialist ethical commissions, has now some difficulties to take the issues out of the traditional sphere of parliament and out of experts' area. It's as if there would be no role for fruitful deliberative and participatory technology assessment within the regulatory framework for genetic testing. The framing of the issue by actors was interesting for the comprehension of the French scenario. Genetic testing was almost never defined per se by the interviewees. The framing of the problem was neither about the “diagnosis” technology, nor the product like DNA chips but about the potential use of genetic test in fields other than medical and research sectors. The ethic risks in these two fields were perceived as real but not sufficient in order to outweigh the potential benefits for medicine and science. On the contrary the risks of discrimination in insurance and employment raise important fears. These fears are at the origin of an attempt of enrolment of new actors by associations and unions of professionals in the Health and employment areas. Will this mobilisation lead to a re-opening of the public discussion, until then enclosed by the moratorium of insurers, the moral authority of CCNE and the contradictory interests of key actors towards genetic testing? The factors of setting the political agenda and public debate are not easy to anticipate. But a first and primary comparison with GMOs French situation can help us to understand the specificities of genetic testing. French scenario and to make some hypothesis about the future shape of the networks. The science problem seems to concern lay people in context of scandals or potential risks for human health (like BSE or GMO's ). Without this clear perception of a potential concrete and collective risk it's almost impossible to persuade people to mobilise and act. And genetic tests have got until then the benefits of medical hopes. The absence of agreement on the relevance of tests, which until then has checked the mobilisation, 98 will progressively not be anymore an issue because of the scientific progress in this field. So the determining evolution in favour of a public debate will probably be linked to the choices of the State concerning the future revision of the bioethic laws and concerning its insertion in the international framework. It

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We remind that the non -relevance of genetic test is a factory of non genetic test issue for most of interviewees.

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will be linked to the way the society and particularly the future behaviour of employers and insurers will appropriate this health tool too. If a public debate develops but collides with a national strategy for genetic testing diffusion, its impacts will be weak. The ability of mobilising actors to enrol others actors and to grow in generality in their argumentation will be determining for the success of the mobilisation and public debate in terms of political impacts. The actor network in GMOs situation succeeded in the growing in generality. The difference in genetic testing situation is the difficulty to find the way to make patients associations mobilise on the ethical and social risks because they all have an official strategy pro genetic testing. The gap between the national context and the international situation is a factor to take into account for the comprehension of the dynamic of this problem. The future position of State as regards to the international context (OVIEDO convention and authorisation of genetic test in UK) will give more indication about the strategy of State concerning genetic testing. The European committee of insurance demand flexible rules for genetic test use in insurance, since 1995 50 American Firms have been commercialising genetic tests, the 26th of June 2000 Celera Genomics and the HGP(Human genome project) announced together the completion of the card for the human genome. The French State may not have a passive attitude towards these international factories. If they have not a big public visibility the pharmaceutical firms and different ministries have a key and underground role in the development of genetic testing. Their action is probably determining for the absence of overflowing of the debate on genetic testing.

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BIBLIOGRAPHY Colloque parlementaire, "développement des biotechnologies médicales et problèmes éthiques" SCH consultant, Oct. 1999 Conseil d'Etat, "Les lois de Bioéthique, 5 ans après" La documentation Française, Déc 1999 Conseil permanent de la conférence des évèques de France, Verspieren P "Essor de la génétique et dignité humaine" Centurion, 1998 Feuillet Le Meunier B, "Les lois bioéthique à l'épreuve des faits" PUF, 1999 Hermitte M-A ; Noiville C, "Les tests génétiques et l'assurance" centre de recherche en droit privé de l'université de Paris I Lenoir N ; Mathieu B, "Le droit international de la bioéthique" PUF, 1998 Memmi D, "Les gardiens du corps" Editions EHESS, Oct. 1996 Millez J, "l'euthanasie du fœtus, médecine ou eugénisme?", Odile Jacob, 1999 Munnich A, "La rage d'espérer, la génétique au quotidien" Plon 1999 OPECST, rapport Génomique et Informatique, annexe 1, Le problème du financement des nouvelles thérapies, Juin 1999. Rabeharisoa V ; Callon M : "Le pouvoir des Malades, l'AFM", Les Presses, 1999 Salat-Baroux F, "Les lois de bioéthique", Dalloz, 1998

REVUES Akrich M, "comment décrire les objets techniques ? In technique et culture,9, 1997 Crespin R ; Lascoumes P, "Régulation de la carrière d'un instrument de santé" in Revue de sociologie du travail, 1er trimestre 2000 Mehl D, "les biotechnologies : vers la transformation de l'homme", in Les Cahiers Français, Science et Société, n° 294, p 74-78 Revue BIOFUTUR, "l'irrésistible envolée des tests génétiques, p14-31, Sept 98 Revue BIOFUTUR, "La bioéthique dans tous ses états", Avril 1999 Revue LAENNEC, "Médecine Prédictive, quelle place pour l'homme?", Mars 99 Revue PRATIQUES, "La société du gène: entre rêves et cauchemars" 1er trimestre 98 Revue Usine Nouvelle(Hors série), "Ces tests qui révèlent nos maladies", Nov. 1999. Revue VLM, le journal de l'AFM, " DPI, la loi doit être appliquée", p 24, Fév. 1998

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SITES www.biotech-actu.com : the site of a specialised biotech revue. www.ccne-ethique.org : reports of the CCNE www.europa.eu.int/comm/reasearch :site about the new group of bioscience in EU www.lemonde.fr: files about genetics in the journal Le monde

GLOSSARY

AFM : Myopathy French association CEA : Centre for Atomique energy CCNE: national consultative committee for ethic DPI: Antenatal genetic diagnosis EGSP: States General of Public Health, Etats généraux de la santé publique FFSA: French federation of insurance firms FORGENI: Association for the formation of Nord Isère Practitioners GEL : genetic and freedom (association of geneticists and doctors) GMOs : genetically modified food INRS: National Institute of Research and Security for Prevention of Working Accident and Professional Diseases Médecins du travail : are doctors who carry out the annual examination, required by law, of a company's employees. They practise industrial medicine. OPECST : Parliamentary Office for scientific and technological choices

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