WHEREAS the Members are convinced that biological human samples including associated medical data and biomolecular research tools are a key resource in unravelling the interplay of genetic and environmental factors causing human diseases and impact on their outcome, identification of new biomarkers and targets for therapy as well as contributing to reduce attrition in drug discovery and development.

14. Believes, furthermore, that national and European rules governing this area ought to state clearly that genetic testing should be used only for investigative, preventive, therapeutic or medical research purposes, and on the basis of proper medical advice, as stipulated in Article 12 of the Council of Europe Convention on Human Rights and Biomedicine, as well as of full respect for the fundamental rights of the individual and, in particular, those relating to confidentiality and personal data protection, as already enshrined in law at national and Community level;

Article 12 of the Council of Europe Convention on Human Rights and Biomedicine states that: ‘Tests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease . may be performed only for heath purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling’.

Dr. Peter Bridge, Member, Board of Directors (Director, Molecular Diagnostics Laboratory and Chair, Medical Genetics Research Group, University of Calgary).

(45) Whereas processes for modifying the genetic identity of animals which are likely to cause them suffering without any substantial medical benefit in terms of research, prevention, diagnosis or therapy to man or animal, and also animals resulting from such processes, must be excluded from patentability;

Federal privacy standards applicable to DNA testing in medical genetic centres are incorporated into the Privacy Act and the Personal Information Protection and Electronic Documents Act.