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Genetic tests only by consent

On 27th August 2008, the German Federal Cabinet agreed on a draft bill on human genetic testing (Gene Diagnostics Law). The amendment is based on benchmarks agreed by the Cabinet in April 2008.

Findings in modern human genetics can help to identify and cure diseases. However, genetic diagnostics also affects human dignity and self-determination. Therefore, care has to be taken to prevent genetic diagnostics from being misused.

Excluding discrimination

The law protects people against the danger of potential discrimination that could result from knowledge of the genetic properties of individuals. More than any other examinations, genetic examinations create tensions relating to the human dignity, health and informational self-determination of every single person.

Protection is necessary because genetic testing enables the identification of the unalterable genetic basis of an individual. Data acquired have a long validity and are very sensitive: for example, they enable predictions to be made on diseases, hypersensitivity or predispositions.

Genetic information is also an explosive issue because those concerned are unable to influence the type and scope of the findings on their genetic makeup. In addition, individuals are unable to assess what happens with the acquired data. The Gene Diagnostics Law seeks to prevent potential misuse.
The most important regulations in the draft bill are:

Nobody must be discriminated against or stigmatised for their genetic properties. In addition, genetic tests can only be carried out by doctors qualified to do so.

Employers will be forbidden to require their employees to undergo genetic tests. The Employment Law and work safety regulations do not allow exclusion on the basis of genetic tests.

Insurance companies will not be permitted to ask their clients for genetic tests or 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.

(Benchmarks of the Gene Diagnostics Law – see link)
On the other hand, the Gene Diagnostics Law also protects the opportunities offered by genetic testing for the individual and his or her health. The law stipulates mandatory requirements for the carrying out of genetic tests.

The person concerned can determine what happens

The draft bill also specifies that genetic testing must only be carried out when the person concerned has given his or her legal consent.
In addition, everybody has the right to informational self-determination: this includes the right to know one’s own genetic findings (right to know). But this also includes the right not to know (right not to know).

People undergoing genetic testing themselves determine what will happen with their data. Apart from individual information, each individual also has to be advised on genetic examinations.

In the case of prenatal genetic testing, the future mother must receive genetic counselling. The future mother can also be offered help. At the same time, her basic personal rights will be respected.

In addition, the draft bill prohibits secret tests to determine parentage. These tests can only be carried out with the consent of the child or of his or her legal representative.

Source: REGIERUNGonline - 27 August 2008
Website address: https://www.gesundheitsindustrie-bw.de/en/article/press-release/genetic-tests-only-by-consent