Ethical and legal implications of storing human genomic data

The development of DNA sequencing technologies challenges human genome research considerably regarding its legal and ethical consequences. The deep insights into the genetic endowment of an individual that are already possible today are of potentially great importance for the current and future health status of the individual. Furthermore, genomic data also allow conclusions about the identity and genetic properties of close blood relatives to be drawn. Owing to their inherently personal nature, genomic data require particularly careful treatment. Alongside appropriate informed consent from all participants, central elements of responsible genomic data management within the framework of a research project include anonymization/pseudonymization of the data and separation of data management responsibilities. Additionally and in keeping with good scientific practice, time constraints and regulations pertaining to the retention of data must be adhered to. These aspects will be highlighted in the present article and discussed in terms of their implementation into scientific practice.