05/08/2026

Print Page

Portal provides guidance on sharing genomic data

A new information portal, "Meine Genomdaten. Teilen und Helfen", is now available to provide clear, accessible information about the role of genomic data in medicine and research. The portal helps patients, their families, and other interested individuals explore the topic of sharing these sensitive data for research in an evidence-based way, supporting informed decision-making.

Genomicdata play a pivotal role in cancer research by improving our understanding of cancer biology, enabling the identification of biomarkers, and supporting the development of personalized treatment approaches. Many studies rely on patients who voluntarily choose to make their genomic data available for scientific research. Transparent and accessible information can help individuals make informed decisions while strengthening trust in the responsible handling of sensitive health data.

The portal introduces three key topics:

  • Genomic medicine: How genomic data support diagnosis and personalised treatment strategies.
  • Genomic research: How sharing data enables new scientific discoveries.
  • Sharing genomic data: The legal, ethical, and practical aspects of data sharing, including how personal data are protected.

The portal also includes background information, a glossary, and a range of podcast formats that provide additional insights into genomic medicine and research.

The content was developed within scope of the German Human Genome-Phenome Archive (GHGA) in close collaboration with patients and family members. Through focus groups, the information was shaped around the questions and concerns people actually face when deciding whether to share their genomic data.

For translational cancer research, well-informed patients and the responsible use of genomic data are essential. By making complex topics understandable and accessible, the new information portal helps strengthen communication between researchers, clinicians, and patients while supporting informed participation in research.

More information can be found here.