In August 2008 the Federal German Cabinet submitted the draft bill on the Law of Genetic Examination of the Human Being (Gendiagnostikgesetz). The bill was given expert approval after a public hearing of the German Parliament Health Commission held on 21 January 2009.
The aim of the Gendiagnostikgesetz is the protection of an individual’s right to determine how their genetic data is used and to prevent discrimination. The provisions of the draft bill apply to data relating to health and genealogy, particularly with regard to employment relationships and insurance contracts.
In general, lobbyists and experts have determined that the draft bill contains a reasonably sophisticated understanding of the treatment of genetic examinations. However, experts in this area have requested that substantial modifications to the details of the bill should be made.
In particular, pre-natal diagnosis should only be permissible under strict requirements, and the main association representing physically and mentally disabled people has requested that genetic examinations for diseases which only manifest later in life should be prohibited entirely.
Experts have been disappointed that the draft bill fails to cover adequately the scientific sector carrying out the tests and wish for greater protection and legal certainty as to the application of the relevant science itself.
The new law would also prohibit insurance companies from asking and/or requiring customers to provide genetic data. However, the draft bill provides for one exception: insurers are able to ask for existing (as opposed to newly generated) genetic data if the value insured exceeds €300,000. The German Bar Association claims that this exception is discriminatory and is not practical; others think that this constitutes an acceptable compromise.