title: [Human genetic data from a data protection law perspective].
abstract: The collection and use of genetic data have caused much concern in the German population. Data protection is widely seen as the tool to address these fears. The term genetic data is not self-explanatory, as it depends on the different types of genetic diseases. The protection of genetic data as defined with regard to the different sets of diseases needs to fit into the preexisting data protection legislation. Still, the particularities of genetic data such as the multipersonal impact need to be considered. A balance between the information needs of society and the right to privacy requires a medically driven criteria. The medical term of indication which corresponds with the data protection term of purpose should serve as a tool in order to balance the rights of the patients and their relatives or between clients and third persons involved. Some countries have set up new legislative acts to address the challenges of human genetics. The current state of German data protection law leaves citizen rather unprotected as long as the data are used for medical purposes in a wider sense. A special law on the collection of genetic data has been discussed for several years, but it should be questioned whether the scope of a sector-specific law would serve citizens better. It seems to be preferable to adjust the existing Data Protection Act rather than drafting a specific law which covers the field of human genetics. This adaptation should reflect upon the different technical ways in which genetic data are collected and used.
authors.affiliation: Public Health Genomics European Network (PHGEN), Fachhochschule Bielefeld, Bielefeld, BRD. tsidb@fh-bielefeld.de
authors.forename: Tobias
authors.initials: T
authors.lastname: Schulte In den Bäumen
mesh_terms: D016494:Computer Security / Q000331:legislation & jurisprudence*; D030541:Databases, Genetic / Q000331:legislation & jurisprudence; D030342:Genetic Diseases, Inborn / Q000235:genetics*; D030661:Genetic Privacy / Q000331:legislation & jurisprudence*; D036281:Genetic Research / Q000331:legislation & jurisprudence; D005858:Germany; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence; D026684:Personal Autonomy