The ethical and social implications of the increasing collection, storage and sharing of human omics data for research have recently been a matter of debate. Governance of genomic research databases such as GHGA has received growing attention in this context. For a long time, the role of patients has been limited to that of data subjects. This is changing, with patients being increasingly seen as active partners, collaborating with researchers and institutions in the generation of knowledge, and in the development and operations of such databases. 

Patient involvement in research and governance not only enhances  accountability, but also improves research outcomes by shifting the focus of research to areas of patient need, ultimately improving patient care. By involving patients in the governance of GHGA, we not only hope to enhance transparency, but also allow patients to take an active role in decisions about how their data are used.

Dialogue with patients

GHGA strives to understand the expectations and concerns of patients. We have involved patient representatives from the rare disease and cancer patient communities early on in our participatory PaGODA study (Patients’ perspectives on Governance of an Omics Data Archive). In two deliberative forums, we assessed their views on transparent and trustworthy governance of genomic data archives in general and the German Human Genome-Phenome Archive (GHGA) specifically. In a follow-up dialogue event, patients and GHGA members reached a consensus on practical aspects of the implementation of impactful patient involvement in GHGA, including the decision to establish a Patient Advisory Board. Details of our concept for patient involvement in the governance of GHGA can be found in our white paper.