Statement by the European Group on Ethics in Science and New Technologies on advertising genetic tests via the Internet

Brussels, 24 February 2003

The purpose of this statement is to alert civil society and decision-makers on the problems raised by advertising of genetic tests via the Internet.

There is a proliferation of Internet-based offers of genetic tests aimed especially at establishing fatherhood as well as tests for predisposition to several diseases - heart diseases, diabetes, etc. Advertising is getting increasingly aggressive and pervasive, also in Europe; in some countries it can even be found in popular chain stores, service stations, highway restaurants and television.

Mass marketing of genetic tests raises several serious problems in ethical, social and legal terms, which the European Group on Ethics in Science and New Technologies considers to require urgent attention. The information currently being offered is likely to be misleading and incomplete, particularly in view of the limited level of predictability of diseases linked to test results in the case of multigenic characters.

Often, there are not sufficient guarantees that genetic data sent for such tests have been collected in compliance with the regulations applying to data subjects' consent - with particular regard to paternity tests. Genetic tests can be harmful without proper advice and counselling, under Article 12 of Council of Europe's Convention on Human Rights and Biomedicine, lawfulness of genetic tests is also made conditional upon "appropriate genetic counselling". The European Group on Ethics stated in its Opinion Nr 6 on ethical aspects of prenatal diagnosis (20 th February 1996): " Careful genetic counselling, both before and after the test is an integral part of the test and should not be separated from sampling and testing " . Databases of genetic test results could be used to discriminate against some groups of persons.

Consequences of genetic testing for both individuals and society should be assessed carefully. Given the peculiar features of genetic data, fundamental rights may be violated, in particular equality rights. Both individuals' health and confidentiality of health data may be jeopardised. Advertising of genetic tests tends to convert them into commodities and to give rise to a demand for genetic testing which may result into disruption of social and personal conflicts.

The European Group on Ethics in Science and New Technologies intends to work on these issues in the future. An Opinion on the ethical aspects of genetic testing in the work place is in preparation.

DN: IP/03/3 Date: 24/02/2003