Minimum Standards Required for Dealing with Genetic Investigations

The decoding of the human genome poses a fresh challenge for the legislator. It is of supreme importance to guarantee self-determination in informational matters and to prevent any discrimination on the basis of genetic make-up. The following sections outline some important principles to be respected when dealing with genetic investigations.

The carrying out and processing of genetic tests must be regulated by legislation. In the area of criminal prosecution, legal foundations already exist to some extent in Switzerland. For genetic investigations in the areas of medicine, the workplace and liability issues, there is draft legislation which in the near future should be dealt with by parliament.

Genetic investigations must in principle be carried out only on a voluntary basis. Influence of any kind, especially of a personal or social nature, must be avoided. Gene tests are admissible only when the person affected has given his or her consent. This consent, freely given and at all time revocable, does not become legally valid until the affected person has received comprehensive genetic counselling. In particular, the person affected must be informed of the purpose of the genetic investigation and of the risks involved.

The affected person also has as an option the so-called right not to know, and is free to refuse to be informed of the result of the investigation. This right not to know assumes special significance in view of the fact that although many illnesses and risks of illness can be diagnosed, they cannot yet be treated.

In connection with gene testing, special protection must be guaranteed for minors and for persons who lack the capacity to judge. Genetic investigations in the case of persons who lack capacity, for instance, should be carried out only when they are absolutely essential in order to protect the individual's health. Exceptionally this may also apply if a grave hereditary family illness cannot be diagnosed in some other way. In any event, the opinion of the person lacking capacity must be obtained prior to the test insofar as this is possible.

In the field of ante-natal diagnostics, it should be possible to ascertain information only when it pertains to curable problems, or to problems which would permit an inference of grave damage to the health of the child. Mass screening of new-born children should be restricted to inherited conditions that can be cured.

Genetic investigations must in principle be banned in the spheres of work and insurance. Potential discrimination can simply not be ruled out here. Exceptions should be allowed only when there is an urgent need.

Finally, quality standards must be introduced in order to guarantee that genetic data is dealt with securely. Such a sensitive area will also require that pertinent criminal offences should be created.

The principles set out above are not exhaustive, and the legal aspects of data protection presented by the decoding of the human genome will require further deliberations.

[July 2002]