EU Presidency Statement - Discrimination and genetic privacy

Mr. Chairman,

Allow me to address you on behalf of the European Union. The Central and Eastern European Countries associated with the European Union - Bulgaria, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovakia, Slovenia -, the other associated countries Cyprus, Malta and Turkey, and the EFTA countries which are members of the European Economic Area, Iceland, Liechtenstein and Norway, endorse this statement.

The European Union would like to thank the Argentine Republic for tabling an agenda item and a draft resolution on such a novel, up-to-date subject as discrimination and genetic privacy.

Genetic discrimination warrants special consideration because it comes at the intersection between two basic human rights: the right to privacy and the right to protection from any form of discrimination. One major ethical issue concerns respect for confidentiality and privacy, since genetic testing reveals the most intimate details of a human being's physical and even psychological determinants. What is more, the information does not only affect that individual, but also involves members of the person's nuclear or extended family (relatives), as well as future generations. The European Union is also very much aware of the risks of "preventive discrimination", particularly in matters of health, insurability and employability, as now made possible by scientific and technological progress. Genetic testing is currently confined to screening for certain diseases such as breast and colon cancer, or diabetes, but is set to become increasingly common and so a lead needs to be given before unacceptable practices become established.

The Universal Declaration on the Human Genome and Human Rights, adopted at the 29th session of UNESCO's General Conference, on 11 November 1997, proclaims in particular that respect for human dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity. The Declaration stipulates that no one must be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity. The European Union takes this opportunity to pay tribute to the pioneering work undertaken by the International Bioethics Committee, including work on privacy and prevention of discrimination.

The European Union itself has legal instruments already extensively protecting individuals' right to genetic privacy and providing safeguards against discrimination, such as the EU Charter of Fundamental Rights and the Council of Europe Convention on Human Rights and Biomedicine.

The European Union lastly welcomes the ease with which a consensus has been arrived at on the draft resolution. It will remain particularly attentive to maintaining a balance and institutional consistency with other bioethics processes under way.

Thank you.

| Arriba |

• UE informe sobre la alta Comisionada para los Derechos Humanos (21/3/2002)