Genetic tests and genetic analyses are modern developments in genetic technology which allow scientists to determine genetic characteristics, prenatal risks or diseases, and dispositions for diseases, among other things. Diagnostic genetic tests focus on the diagnosis of diseases, dispositions for diseases, or factors which influence the effect of medication. The purpose of predictive genetic tests is to diagnose diseases or health problems that will only become apparent in the future or dispositions in descendants.
These testing methods involve both opportunities and risks. The methods may be especially beneficial if they are used to detect the disposition for a treatable disease at an early stage. Pharmacogenetic tests may make it possible to determine dosages and select medications on an individual basis. If a predictive genetic test reveals that a person has a genetic disposition for a given disease, this may also cause significant psychological distress. Therefore, it is generally recognized that everybody has the “right to know” her own genetic constitution as well as the “right not to know.” Problems arise because genetic data always provide information not only about the person tested but also about biological relatives. The term genetic discrimination is defined as the discrimination of persons who face disadvantages due to particular genetic characteristics or already determined dispositions. Varieties of genetic discrimination have been discussed widely in the context of insurance and employment, but these are not the only problematic areas.
In Germany, on 1 February 2010, the Genetic Diagnostic Act (Gendiagnostikgesetz, GenDG) governing genetic testing in human beings went into effect. This legislation has since provided a legal framework for genetic testing, for genetic analyses that are carried out within the framework of genetic testing, and for the use of genetic samples and data. It aims to prevent discrimination on the basis of genetic characteristics, especially in order to fulfill the constitutional obligation to respect and protect human dignity and to guarantee the right to self-determination with regard to personal data. Whether genetic exceptionalism makes sense, i.e., whether special rules should apply to genetic data as opposed to other medical data, remains a controversial matter.
Marion Albers, 22.07.2014 / Marion.Albers@uni-hamburg.de