Details

The new information portal „Meine Genomdaten – teilen und helfen“ („My Genomic Data – Share and Help“) has been launched to support patients, family members, and interested individuals in making an informed decision about sharing genetic data for research. The portal explains in easy-to-understand terms what genetic data is, what role it plays in medicine, and how it can help improve our understanding of diseases and lead to the development of new diagnostic and treatment options.

After taking a genetic test or as part of a treatment, many people face the question of whether they would like to make their genomic data available for research. The new portal answers important questions on this topic, such as: How is genetic data used in research? What opportunities does this present? And what factors should individuals consider before making a decision? The goal is to provide a clear and scientifically sound basis for making an informed, self-determined decision.

The initiative is backed by the German Human Genome-Phenome Archive (GHGA), a consortium of more than 20 research institutions and university hospitals in Germany. The GHGA archives genetic data from research and medical care and makes it available to researchers—only with the patients’ consent. The goal is to ensure that valuable health data is not left unused but instead contributes to improving medical care in the long term.

Go directly to the new portal: https://www.meine-genomdaten.de/ (in German)