Additional Protocol to the Convention on Human Rights and Biomedicine concerning Genetic Testing for Health Purposes

Biological and medical research has led to remarkable progress in the field of human health. The rapid developments in this sphere have prompted the Council of Europe to consider the ethical and legal aspects of applications of genetics, particularly genetic testing, and to draw up legal rules to protect fundamental human rights with regard to these applications.

The new Protocol sets down principles relating inter alia to the quality of genetic services, prior information and consent and genetic counselling. It lays down general rules on the conduct of genetic tests, and, for the first time at international level, deals with the directly accessible genetic tests for which a commercial offer could develop in future. It specifies the conditions in which tests may be carried out on persons not able to consent. Also covered are the protection of private life and the right to information collected through genetic testing. Finally, the Protocol touches on genetic screening.