We are committed to addressing patients’ needs and expectations, so we can actively and sustainably work together.
The ethical and social implications of collecting, storing, and sharing human omics data for research have been widely debated. Governance of genomic research databases, such as GHGA, has gained increasing attention in this context. Traditionally, patients have been viewed as passive data subjects. However, this is changing, with patients now being recognised as active partners in research, contributing to knowledge generation and the governance of genomic databases.
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, we hope to enhance process transparency and enable those affected to take an active role in discussions about their data.
Dialogue with patients
GHGA is committed to understanding patient expectations and concerns. As part of the participatory PaGODA study (Patients’ perspectives on Governance of an Omics Data Archive), patient representatives from the rare disease and cancer communities have been involved early on. Through deliberative forums, GHGA assessed patients’ views on 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. More details on this approach are available in our white paper.
Latest Initiative: Focus Group on Patient Communication
In spring 2025, GHGA held three focus groups with patients, affected persons as well as representatives from the interested public. Subject of the discussions was the development of a website for patient communication. The discussions aimed to explore their communication needs and preferences when potentially facing the question whether to share genetic data for secondary research or not.
The discussions brought up valuable insights on the design and structure of the website as well as on the desired topics to be covered. The project team is currently translating the collected statements into specific design and content recommendations. The aim is to develop a website that represents a range of opinions, while being both informative and accessible. The launch of the first version of the information portal is planned for fall 2025.
GHGA’s PaGODA study, which explored how patients can be meaningfully involved in the governance of genomic data, has now been published in Public Health Genomics.
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How to talk in an accessible and emphatic way about the sharing of genetic data? GHGA consulted patients, relatives and interested persons - and gained valuable insights.
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Discussion around expectations and needs towards patient communication. The aim is to build a comprehensive online information hub for patients, care-givers, and the interested public. Registration for focus groups is open.
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In a recently published white paper, we summarise the results of the PaGODA-Study and present a concept with concrete steps for implementation of meaningful patient involvement in the governance of GHGA.
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In early March, GHGA continued its dialogue with patients on the implementation of effective patient participation in GHGA. The consensus-building meeting focused on a recruitment strategy for patient representatives and outreach objectives.
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In early July, GHGA met with patients to understand their perspective on GHGA governance, particularly in terms of genomic data sharing. Based on these discussions a concrete strategy for patient participation will be developed.
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Within a participatory study, GHGA will hold deliberative democratic forums exploring the patients’ perspectives and which concrete roles patients could take within GHGA governance.
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