Valuing patient’s perspectives

Why patient involvement matters

The collection, storage and sharing of human genomic and other omics data raises not only scientific and technical questions, but also ethical and societal ones. People whose data may be used for research should therefore have an opportunity to contribute to discussions about how these data are managed and shared.

Involving patients in research and governance enhances transparency and accountability while improving research outcomes by aligning them with patient needs. This ultimately leads to better patient care. By involving patients in the ​​​​​governance of GHGA as well as in communication measures, we aim to enhance transparency and enable those affected to take an active role in discussions about their data.

Dialogue with patients

GHGA engages with patients and patient representatives through different formats and at different stages of its work. Our activities include deliberative forums, dialogue events and exchanges with established patient organisations and advisory bodies.

One milestone was the participatory PaGODA study (Patients’ perspectives on Governance of an Omics Data Archive).  In two deliberative forums, 26 people from the rare disease and cancer communities shared their views and needs regarding transparent and trustworthy governance of genomic data archives, specifically the German Human Genome-Phenome Archive (GHGA). A follow-up dialogue event between patients and GHGA members led to a consensus on how to implement meaningful patient involvement. The results of the discussion were published in a white paper. The implementation of the PaGODA study were further evaluated in a research article, providing insights into how patient perspectives can be meaningfully incorporated into the governance of genomic data archives.

The findings showed that meaningful patient involvement requires more than simply asking for patients’ opinions. Participants discussed why involvement matters, what concerns they have, which areas of governance should include patient perspectives, what resources are needed, and how patient representation should be organised. 

Patient involvement in communication 

In 2025, GHGA also conducted focus groups with patients, affected persons and interested members of the public to better understand their needs and expectations regarding communication about genome medicine, genome research and genome data sharing.  The insights contributed to the development of the information portal “Meine Genomdaten. Teilen und helfen.”. They helped shape the content and structure of the website, ensuring that it addresses questions and uncertainties that may arise in this situation.

Continuing the dialogue

Patient involvement is an ongoing process. GHGA therefore continues to seek opportunities for dialogue and collaboration. In July 2026, GHGA met with the Patient Advisory Board for Cancer Research at the German Cancer Research Center (DKFZ). The exchange focused on the newly launched information portal as well as sharing and use of genomic data in general. This exchange builds on the established structures for patient involvement at the DKFZ, GHGA’s coordinating institution. It provides an ongoing opportunity for dialogue with patients and patient representatives.