On the Political Side of Gene Therapy, What can be Drawn from the French Situation

Abstract

This chapter discusses the impact of gene therapy as a “public problem” on the French traditional policy-style. Gene therapy in the context of French society, where it is applied on the soma , is widely supported by public opinion, owing to an enthusiastic popularization by the media and a strong backing from the political authorities. In a traditional context, as part of general support for medical research in France, gene therapy is considered as a progress in scientific knowledge and in medical treatments. In a survey published in January 2001, 88% of the interviewed people in France wished the discoveries of genetic research would be used to “cure serious diseases.” At the same time, in another poll, 90% of the interviewees deemed scientific research to be a national priority and 54% that the public expenditure spent on biotechnology research should increase. The passage from a scientific issue to a political matter implies a “publicization” process: transforming an activity executed by experts in a confined—almost secret place (the laboratory)—into a topic that should be discussed on the public scene (the “agora”) by lay people. Gene therapy raised three main political issues, namely, coping with sanitary risk, ensuring morals, and reviewing the French traditional policy-style. When the daily Le Monde announced on 31 January 1990 that “two patients suffering from cancer were involved in a gene therapy clinical trial” [ 1 ], it seemed a new era for medicine was dawning. Applied to cancer, one of the major plagues of our time, gene therapy seemed a miracle. Its process was explained to the public through simple words, on the pattern of a syllogism: given that cancer is caused by a defeated gene and that gene therapy allows one to modify the genome, gene therapy should fight cancer. It sounded logical. Contrary to some other scientific news, more complex to explain to lay people, everybody could see the benefit they could obtain from gene therapy. Consequently, this “manipulation” of the human genome was perceived as positive and received wide support from the French public. According to the politicians, gene therapy was “without any contest, a fantastic future path” [ 2 ] to enhance public health. It would also affirm French “grandeur” to the world, placing France among the international leaders in the competitive field of biomedical research and industry. Beside these radiant hopes, the tragic hazards intrinsically linked with gene therapy were under public discussion. Modifying the human genome, this most private and basic component of human beings, via gene therapy was not a common medical practice. In a context of fast-growing application of biotechnology to human beings [ 3 ], gene therapy was framed as a political stake. There was no harsh controversy on the opportunity of authorising or banning it. Instead, a consensus was met with the only dilemma being how to set limits to gene therapy, implying to put an end to the principle of the freedom of research. For political leaders, this was a new challenge to tackle, as it broke the tacit rule that the State would not interfere with science regulation. How came, then, the French legislator to regulate gene therapy? Gene therapy will first be examined in the French societal context, where it is, applied on the soma , widely supported by public opinion, thanks to an enthusiastic popularisation by the media and a strong backing from the political authorities (see Section 1 ). This will lead us to identify the main political dilemmas gene therapy raised and how they were handled. We will stress, here, the impact of gene therapy as a “public problem” on the French traditional policy-style (see Section 2 ). Broadening our scope, we will, finally, try to sketch the prospective political stakes of gene therapy (see Section 3 ).