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Genetic testing: binding consultation to become central element

The benchmark paper on the Genetic Diagnostics Act, which has long been heralded by the governing coalition, foresees the binding counselling of people concerned. The decision was recently announced in Berlin by the health-political spokesperson and chairman of the CDU/CSU health working group in the German Bundestag, Annette Widmann-Mauz. The coalition is strictly opposed to allowing employers to require their employees to undergo genetic tests.

The coalition has plans to establish a multi-stage concept in terms of information and counselling for genetic investigations. The plans foresee making genetic counselling obligatory for people undergoing predictive and prenatal genetic tests. However, counselling will not be required for diagnostic genetic examinations.

Core requirement fulfilled

Brigitte Widmann-Mauz. (Photo: CDU/CSU-BT-Fraktion) © CDU/CSU-BT-Fraktion
According to Widmann-Mauz, one of the CDU/CSU’s main requirements will become part of the planned law. Within the scope of the recognised right to know or not know about results, counselling will not be compulsory for those who wish to exercise their right not to know. Tests that do not directly provide information on the potential health impairments of foetuses or embryos before or after birth, will no longer be possible. This will also include tests for determining the gender of the unborn baby.

In addition, genetic testing will only be carried out by physicians. The law also envisages that participation in genetic testing will be voluntary and not give rise to the opportunity for genetic discrimination or stigmatisation. A central genetic diagnostic commission will work out binding standards on the counselling, processing as well as execution of genetic tests.

Insurance companies ignored

Employers will be forbidden to require their employees to undergo genetic tests. In terms of work safety, exceptions will be made under very strict conditions. Insurance companies will not be permitted to ask their clients for genetic tests nor for information on genetic investigations that have already been carried out. Exceptions to the prevention of misuse will be made in particular cases, for example in the case of people wishing to take out a very high-value life insurance policy.

Source: CDU/CSU – Parliamentary group in the German Bundestag, 27.03.2008 (P) (wp - 09.04.2008)
Website address: https://www.gesundheitsindustrie-bw.de/en/article/press-release/genetic-testing-binding-consultation-to-become-central-element