The sharing of scientific, genomic and health-related data for the sake of research is of a fundamental importance in order to provide continuous progress in our understanding of human health and wellbeing. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we still lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Such framework will definitely assist in the progress of global science and responsible research conduct.
This is why BioSHaRE researchers in collaboration with P3G, the Global Alliance for Genomics and Health, IRDiRC (International Rare Diseases Research Consortium), H3Africa and other organizations started to work on the development of an International Code of Conduct for Genomic and Health-Related Data Sharing.
This international code will give us the guidance on how to responsibly share genomic and health-related data. It also pushes for better access to the shared data, knowledge, and resources in presently under-served regions. Discussions on the topic had started back in 2013 and are currently continuing.
The Code is built around a set of foundational principles and guidelines. It:
- interprets the right to enjoy the benefits of scientific progress and its applications as being the right to engage in responsible scientific inquiry, access and share genomic and health-related data across the translation continuum, from basic research through practical applications; and
- applies the right to benefit from the protection of the moral and material interests resulting from scientific productions to health-related research by developing rights for data producers.
Hopefully, sooner or later we will see the Code serving to promote the data sharing and be the one to penalise the data misuse.
If you follow this link you can read the whole open access article International Code of Conduct for Genomic and Health-Related Data Sharing by Sugano et al. and study in more depths the guidelines and core elements for responsible data sharing.