Germany: Announced Data Protection Conference position on Secondary Use of Genetic Data for Research Purposes

On 15 May 2024, the Conference of the Independent Data Protection Authorities (DSK) of the Federal and State Governments in Germany adopted their position on the Secondary Use of Genetic Data for Research Purposes. The adopted position aims to establish a legal framework that ensures high protection and trust requirements, effective participation, and control options for affected individuals. The position emphasises the sensitivity and high predictive potential of genetic data, highlighting the risks of discrimination and stigmatisation. It calls for explicit consent from individuals for the processing of their genetic data in research, alongside stringent technical and organisational safeguards to protect personal rights and freedoms.