No compulsory genetic testing for newborn babies in Europe

European Research Commissioner Philippe Busquin today rejected stories in several media claiming he had called for genetic testing of all newborn babies in Europe. Mr Busquin said: “I have never advocated any such point of view. It is not the role nor the intention of the Commission to ask EU Member States to impose universal genetic screening of babies. Genetic testing is a matter of free choice and of ethical rules being decided by EU Member States. The Commission does not regulate ethics. I certainly welcome the contribution of the expert group on genetic testing which presented its report to the Commission on May 6-7, 2004. But its recommendations are simple suggestions – and they don’t call for universal genetic testing of babies! Genetic testing can certainly help in the early detection of illnesses, but can never be made compulsory. European citizens rightly expect that the results of genetic tests are reliable and that their genetic information is used properly and following strict quality and ethical standards. The Commission is in particularly studying the issue of quality and reliability of this new technology, that must be used in a responsible and voluntary way and in a climate of confidence with the public at large.”

Independent advice

On December 2002, the European Commission established an expert group to address the ethical, legal and social implications of genetic testing. The Group included representatives from NGOs (including patient organisations), pharmaceutical companies (GSK, Roche, Novartis, Bayer, Genzyme), scientists and representatives from academia specialising in law, philosophy, ethics and medicine. The Group was acting in full autonomy and independence. It prepared a report and 25 recommendations on the ethical, legal and social implications of genetic testing. They only reflect the views of the expert group’s members and are not legally binding.

Free choice

The recommendations were presented and discussed at a conference on May 6-7, 2004. The expert group stated that: “genetic testing is a matter of free choice and it is never to be imposed”. As far as the use of genetic tests for rare diseases is concerned, the expert group suggested that for “rare but serious diseases for which treatment is available, Member States should introduce universal neonatal screening as a priority”. The Group is therefore not asking the European Commission nor Member States to launch any global post-natal genetic screening programme but to consider screening only for rare and serious diseases for which treatments already exist.

Ban on eugenics

The ban of eugenic practices is stated in Art.3 d of the European Charter of Fundamental Rights, approved by the Nice Summit in 2002, and recently included in the Constitutional Treaty for Europe approved by the Council in June 2004: “In the field of medicine and biology the following principles must be respected: (…) the prohibition of eugenic practices, in particular those aiming at the selection of persons (Article II-3)”.

Responsible use

Commissioner Busquin welcomes the work of the expert group in approaching the ethical, legal and social implications of genetic testing. This effort may be beneficial for a responsible use of this technology which represents progress in healthcare and preventive medicine. Any use of genetic tests which would contradict the Fundamental Rights stated in the European Charter, would not be supported by the Commission, as well any proposal which would contradict the principle of subsidiarity and the autonomy of Member States on ethical issues.