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Image header Agence Europe
Europe Daily Bulletin No. 8008
Contents Publication in full By article 29 / 37
GENERAL NEWS / (eu) ep/human genetics

Opinion of civil society

Brussels, 17/07/2001 (Agence Europe) - The European Parliament temporary committee on human genetics, chaired by the Luxembourg Socialist Robert Goebbles organised, last Monday and Tuesday, a hearing with various representatives from civil society.

Presenting the highly critical position of "Basel Appel gegen Gentechnologie", Verena Soldati underlined that people are very aware of the eugenic risks linked to the manipulation of embryonic cells, but far less than those which touch screening tests, notably when they are practised for disease that cannot be cured. While reproaching the media for maintaining a sort of myth on the potentialities of genetics, she felt that the pharmaceutical industry rather seeks to develop screening tests rather than therapies, because it is more simple, less costly and more profitable. Also insisting in favour of a rigorous democratic control over all the aspects of genetic engineering.

For the association of biotechnology industries EuropaBio, Erik Tambuyzer on the other hand called for the expanding of research and development activities. He said that more than 500 medicines from biotechnology are presently in the process undergoing clinical trials in the United States and Europe and concern more than 200 diseases. Only in 2000, 32 new products arrived on the market, raising to 114 the number of "biotech" medicines. His colleagues, representing the EBE group within the European Federation of Pharmaceutical Industries and Associations EFPIA, also raised new very promising diagnostic and therapeutic approaches. Recalling the importance of the patent for innovation even if it does not provide the right to market, they hoped for an acceleration of the works aiming to create a Community patent. They hoped for the establishment of a transparent legal framework, adapted to the developing nature of techniques and the acquisition of new knowledge. An argument also used by Professor Bernd Gansbacher (European Society of Gene Therapy) who said that there must not be any excessive legislation, but to legislate on a scientific basis, while avoiding a victory of emotion and multiple fears. Doctor Rob Elles (European Molecular Genetics Quality Network) and Professor Stylianos Antonarakis (European Society of Human Genetics) insisted over the need to improve the quality of screening tests and to strengthen the networking of laboratories notably to guarantee better access to tests, to the extent that it will never be possible to carryout in all the EU regions tests that allow to screen all the rare diseases. With regards to the latter, Mr Antonarakis did not hesitate to underline that the industry is not interested and that the Member States and the Commission only dedicate a meagre financial means to research into these pathologies. He also underlined that the private sector has very quickly understood tat it is far easier and more profitable to develop a test on the basis of the identification of a gene rather than to continue research into a treatment.

Giovanna Morelli Gradi (Comitato Nazionale Bioicurezza e Biotecnologie) called, at length, in favour of a Community patent and defended the directive on the legal protection of biotechnological inventions, which was challenged by several other speakers. The Greenpeace representative Christoph Then outlined a study, carried out by his organisation, which shows a significant rise in patent applications concerning genes and gene sequences from human beings, animals and plants, and he strongly criticised the directive on the patentability of biotechnological inventions. He called for a return to the tradition definition of inventions, which should in no way cover discoveries. The representatives from the European Insurance Committee put across the cultural differences that remain within the same sector. Presenting a relatively favourable position toward the use of genetic tests, a representative from the British insurance industry explained that the United Kingdom set up a legal framework allowing for the use of this form of test, but that screening for only one illness is permitted for the time being. The representative from the French health insurance sector on the other hand insisted over the "weak predictability" of tests that would even be contradictory with the principal of good faith, which forms the basis of the insurance contract.

The representative from CARE (Christian Action Research and Education) felt that research into stem cells is highly onerous and that the results found are pure speculation. Though he remains nonetheless favourable towards research into adult stem cells if this may permit to find new medical treatments. Though he is opposed to the patentability of genes and the use of genetic tests in the insurance sector. Expressing the opinion of the German Evangelic Church's Council, Sabine von Zanthier spoke in favour of the absolute protection of the human embryo. Insisting on the sacred nature of the human person, the representative from the Holy Synod of the Greek Church, Dimitrios Karamatskos, felt that a possible genetic explosion may disturb the balance between the soul and body or lead to the amputation of man's free will and eternal perspective.

Speaking through the voice of Ursula Beykirch, the Conference of German Bishops took a stance against pre-implantation diagnosis which, it states, undermines the protection of human dignity and opens the way to genetic selection possibilities. It is also opposed to any kind of research on embryos. The same is true for the Commission of the Bishops' Conference of the European Community (COMECE), which considered the constitution of embryos for research purposes as "strictly unacceptable".

After the fashion of other organisations representing disabled persons, "Inclusion Europe" felt that the choice of screening must be automatically provided, but only if there is a cure. Chantal Lebatard stressed that the "Union nationale des associations familiales de France" (UNAF) is opposed to any production of human embryos and any use of surplus embryos for research purposes, but it is in favour of research allowing for the constitution of cell lines from adult stem cells.

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