Doc. 8773
20 June 2000

Protection of the human genome by the Council of Europe

Motion for a resolution

presented by Mr Martelli and others

This motion has not been discussed in the Assembly and commits only the members who have signed it

1.       The Council of Europe’s Parliamentary Assembly notes that the “Human genome” international research project, in view of the numerous and unimaginable consequences that it might have for medicine and for the animal and plant world, conjures up scenarios for all humanity that raise numerous ethical questions, while holding out the promise of enormous improvements in the quality of life.

2.       The genetic age will dawn with the completion of the project: diagnosis will become objective, and it will be possible to identify the presence of genetic disorders or a genetic predisposition to illnesses at an early stage. In many cases, gene therapy will become possible, and this will basically give rise to a form of genetic engineering designed, for instance, to avoid the development of a tumour in an individual found to be at risk. It might also be applied to other illnesses, such as hypertension, diabetes, Alzheimer’s disease, osteoporosis and certain psychiatric disorders.

3.       At the same time, the Assembly is aware of the enormous ethical implications, including some of a negative nature, of further research on the human genome.

4.       It is also aware that substantial economic interests are at stake in the Genome Project, by virtue of the very fact that it might hold out incalculable opportunities for preventing illness and improving treatment, as it involves many public and private research centres to which considerable financial resources will be allocated.

5.       The Assembly is of the opinion that the results of this grandiose research effort – in which the United States has the lead over Europe – must be made available to all, genetic information being a common human heritage, as set out in Article 1 of the Universal Declaration on the Human Genome and Human Rights, adopted at Unesco in Paris on 11 November 1997.

6.        In particular, the Assembly is aware that the prospects opened up by the discoveries associated with the Genome Project pose a whole series of ethical problems, essentially concerning such fundamental issues as the use of genetic information for preventive purposes and possibly a presumed right, at a later stage, to take preventive action when certain genetic information is obtained.

7.       Accordingly, the Assembly

–       proposes setting up, at European level as well, and more specifically in the context of the Council of Europe, a body or authority to fulfil on a permanent basis the task of monitoring the development of the Genome Project research process, ensuring respect for ethical principles in the context of research on the human genome, assessing the effects of such research, and giving thorough consideration to all the ethical aspects of the project;

–       hopes that this body for monitoring research on the human genome will familiarise the European public with new possibilities for progress in genetics in terms of information and technology and also serve to promote campaigns to inform and educate the public, in particular the health professions;

–       asks that consultation of this body be mandatory, and that it formulate an opinion when conventions are drafted on this subject in the context of the Council of Europe and codes of ethics produced; such a body should also have free access to important information on genetics and be able to carry out its own inspections of public and private European research institutes.

Signed ¹ :

Martelli, Italy, EPP/CD

Alis Font, Andorra, NR

Arnau, Spain, SOC

Atkinson, United Kingdom, EDG

Barsony, Hungary, SOC

Behrendt, Germany, SOC

Belohorska, Slovakia, EDG

Besostri, Italy, SOC

Bianchi, Italy, EPP/CD

Björnemalm, Sweden, SOC

Brunetti, Italy, UEL

Cesario, Portugal, EPP/CD

Cioni, Italy, SOC

Cox, United Kingdom, SOC

Cusimano, Italy, EDG

Davis, United Kingdom, SOC

De Carolis, Italy, SOC

Dees, Netherlands, LDR

Diana, Italy, EPP/CD

Duivesteijn, Netherlands, SOC

Durrieu, France, SOC

Eyskens, Belgium, EPP/CD

Gatterer, Austria, EPP/CD

Goris, Belgium, LDR

Gregory, Ireland, SOC

Hancock, United Kingdom, LDR

Hegyi, Hungary, SOC

Kanelli, Greece, UEL

Kroupa, Czech Republic, EPP/CD

Lauricella, Italy, SOC

Lento, Italy, UEL

Marty, Switzerland, LDR

Mularoni, San Marino, EPP/CD

Mutman, Turkey, SOC

Ouzky, Czech Republic, EDG

Polenta, Italy, EPP/CD

Popescu, Romania, EPP/CD

Pozza Tasca, Italy, LDR

Provera, Italy, LDR

Ragnarsdottir, Iceland, EDG

Robol, Italy, EPP/CD

Roseta, Portugal, EPP/CD

Schhütz, Germany, SOC

Serafini, Italy, SOC

Squarcialupi, Italy, SOC

Tahir, Bulgaria, EPP/CD

Telek, Turkey, EDG

Turini, Italy, EDG

Valleix, France, EDG

Volcic, Italy, SOC

Wojcik, Poland, EPP/CD

Zapfl-Helbling, Switzerland, EPP/CD

Zissi, Greece, SOC

Zwerver, Netherlands, SOC

¹       SOC: Socialist Group

      EPP/CD: Group of the European People’s Party

      EDG: European Democratic Group

      LDR : Liberal, Democratic and Reformers’ Group

      UEL: Group of the Unified European Left

      NR: not registered in a group