Friday, February 05, 2010

Genetic Privacy : Genetic Testing in New York : Newborn DNA Samples in Texas : German Genetic Diagnosis Act Went Into Effect on February 1, 2010

As reported in numerous German-language sources, the German Genetic Diagnosis Act (Gendiagnostikgesetz, GenDG) - English translation at eurogentest.org - took force on February 1, 2010. This law is of interest for many disciplines, especially in view of the recent "genetic privacy" decision in Texas and the pending passage of Katie's Law in New York.

A summary of the German law is found at DRZE - Predictive Genetic Testing - this is an excerpt:
"1. The German Genetic Diagnostics Act (GenDG)

... The German Genetic Diagnostics Act will come into effect on 1st February 2010 (§ 27).

The Act explicitly aims at defining the prerequisites for genetic testing and genetic analysis performed in the context of genetic testing, as well as for the use of genetic samples and data, and at preventing discrimination on grounds of genetic predisposition, in order to ensure the state's commitment to respect and to protect human dignity and the right to informational self-determination. (§ 1)

The scope of the Act is not limited to predictive genetic testing: it extends, in fact, to genetic testing carried out on (born) human beings (i.e. postnatal) as well as to genetic examination of embryos and foetuses (prenatal; see special provisions in § 15), covering different contexts and purposes of application (§ 2 para. 1). Besides the use of genetic testing for medical purposes, the Act regulates the use in the field of insurance (§ 18) and in working life (§§ 19-22), as well as genetic screenings (§ 16), and also covers tests to determine parentage ('paternity tests', §17). However, it does not address the use of genetic testing and analysis or the handling of genetic samples and data for research purposes (§ 2 para. 2 no. 1). Moreover, the Act does not apply to measures carried out under provisions relating to criminal proceedings, international mutual assistance in criminal matters, and the Federal Criminal Police Office Act (BKA-Gesetz) (§ 2 para. 2 no. 2 letter a), or relating to the Protection against Infection Act (IfSG) (§ 2 para. 2 no. 2 letter b)."
Read the full summary here and the full English translation of the text of the law here.

Plese Note: Various English translations of the name of the Act can be found, but "Genetic Diagnosis Act" is by far the most prevalent, even though DRZE uses a different translation.

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