Federal Act on Human Genetic Testing

In September 2002, the Federal Council approved its dispatch on the Federal Act on the Genetic Testing of Human Beings. The bill will now be debated in Parliament.

Having been discussed in numerous committees and by a number of government departments, the Federal Act on the Genetic Testing of Human Beings (HGTA), together with its Federal Council dispatch is now before Parliament (BBl 2002 VII 7361). The HGTA has the aim of safeguarding human dignity, preventing abuses, and ensuring the proper conduct and reliability of tests. However, whether the Act can in fact prevent discrimination on the basis of genetic make-up remains open to question. Too many issues in this highly sensitive field have yet to be resolved. In relation to the general requirements for genetic testing, we would refer to our last Annual Report (cf. 9th Annual Report 2001/2002, Section 5.2.1).

The scope of application of the bill includes genetic testing in the health care sector, and in the employment, insurance and civil liability sectors. In addition, the Act is intended to regulate the compilation of DNA profiles to confirm family origins or to identify persons. The fact that the scope of application of the HGTA - in contrast to earlier drafts - is to be conclusively regulated must be welcomed. The processing of genetic data, which must be regarded as particularly sensitive personal data, requires a clear and conclusive statutory basis. Future genetic testing for new purposes should only be made possible if the Act has been amended accordingly.

In the employment, insurance and civil liability sectors, pre-symptomatic genetic tests should be prohibited in principle. (Pre-symptomatic genetic tests are tests that have the aim of identifying a predisposition to a particular diseases before any clinical symptoms have appeared). Subject to certain requirements, exceptions may however be made. Whether this will prevent discrimination against persons with "bad" genetic material, remains open to question. It is certainly conceivable, in the employment sector in particular, that the planned exceptions will be detrimental to certain employees, or indeed groups of people, who share certain specific genetic characteristics (for more on this see Section 7.6).

A new feature in the HGTA is the provision on the requirements for permitting DNA profiling to confirm family origins outside the scope of official proceedings. This also includes paternity testing, which is already being offered by a number of laboratories (cf. also Section 5.2.1). Paternity tests should be made available, inter alia, only if the persons affected provide their written consent; however, the bill provides that consent cannot be obtained from the guardian of a child who is incapable of judgement if the relationship between the guardian and the child forms the subject matter of the test.

The Federal Act on the Genetic Testing of Human Beings is scheduled for debate in Parliament in the forthcoming sessions.

[July 2003]