The GCOF project partners are deeply aware of how much the potential of next-generation sequencing (NGS) for research and diagnostics depends on solutions to major challenges around data sharing and control, informed consent, and the role of genome data within and beyond the clinic. Since these challenges cross disciplinary boundaries (for example simultaneously touching upon genomics, clinical genetics, bioinformatics, ethics, and law), viable solutions will depend on new forms of collaboration among the range of disciplines involved. During an exploratory workshop to discuss the genetics clinic of the future in 2014, a radically interdisciplinary group of participants developed the concept of the Genetics Clinic of the Future (GCOF), organising interdisciplinary collaborations around specific challenges to the implementation of NGS in healthcare systems in the future. Within the GCOF project, widely divergent disciplines work closely together on specific elements of the genetics clinic of the future: data control, consent and data sharing across research and diagnostics.
The work package 5, in which Open Science and Observa are particularly involved, is specifically focused on gathering models and tools to engage the various stakeholders into the GCOF. Only with true engagement of all involved – including citizens – will make the GCOF a socially robust knowledge system that is supported by professionals, patients and citizens alike (Gibbons et al. 2004). Such an approach departs from the assumption that representatives of the “lay” public have relevant forms of experiential knowledge to contribute that should be integrated with scientific knowledge. This work package will facilitate a broad public engagement exercise on the genetics clinic of the future by involving a spectrum of “lay” social groups (e.g. patients, senior citizens, immigrant communities, young people) and professional communities (geneticists, bioinformaticians, medical professionals).
