Patient Involvement in Genomic Data Governance

Our paper reporting on the results of the PaGODA study has now been published in Public Health Genomics! Read the article here.

The PaGODA study was developed by GHGA’s ELSI Workstream in collaboration with two patient co-researchers and explored patients’ perspectives on the governance of genomic data as well as how meaningful patient involvement can be implemented in the governance of data stored by GHGA and similar archives.

What we did: We conducted two deliberative forums online with 26 participants recruited from the cancer and rare disease communities in Germany, and discussed the findings in a follow-up event with the forum participants and representatives from GHGA.

What we found: Participants strongly supported patient involvement in data governance but stressed the need to avoid tokenism by ensuring that involvement actually creates impact. They called for clear roles and responsibilities, as well as mechanisms for transparent decision-making, and access to the information and logistical support needed to contribute effectively. In addition, they supported having ongoing dialogue between data users, infrastructure representatives, and patient communities. Participants viewed patient involvement as a way to embed ethical and societal values into governance structures—helping to ensure accountability, fairness, and public trust.

A huge thank you to our co-researchers and all participants for their time, insights, and thoughtful contributions!