re:publica: Open-source baby? Unintended social effects of newborn genomic data storage
Das Programm ist in Englisch ohne deutsche Übersetzung.
Should we sequence and analyze the genomes of all newborns, possibly store their genomic data long-term and use it as research resource? Researchers are hoping for medical benefits. However, this vision entails considerable ethical problems, as genetic data and samples contain sensitive information.
Genetic data is becoming increasingly important for medicaldiagnostics and healthcare. Based on the technological progress of the last decades, pilot studies for genomic screening programs have been launched internationally, with the aim to collect, evaluate and store genomic data from newborns. The introduction of such population-wide screening programs is also being discussed in Germany. These plans are associated with considerable ethical problems, as DNA data contains highly sensitive information: about biological relationships, disease risks, disabilities, ancestry and possibly also about predispositions to social and personality traits. Genetic information is also unchangeable and a lifelong identifier. In our conversation we would like to highlight some of the problems associated with such a systematic collection of genetic population data, especially with regard to the changing political landscape.