Report

Teaser, summary, work performed and final results

Periodic Reporting for period 2 - GCOF (A stepping stone approach towards the Genetics Clinic of the Future)

Teaser

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...

Summary

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).

Work performed

With a strong focus on implementing and communicating the outcomes of the mutual learning processes initiated in period 1, all the GCOF targets set for period 2 have been achieved, including implementation and assessment of the GCOF simulation project (WP1), explorations of novel approaches to data sharing and control (WP2 &4), dynamic consent frameworks (WP3), public engagement (WP5), policy options (WP6), and wider communication and dissemination (all WPs). As the project has drawn to a close, the ‘spirit’ of GCOF will continue to inform the consortium partners in their daily activities.

Final results

The GCOF project seeks to contribute to the following expected impacts:
1. to contribute to the implementation of ‘Science with and for Society’ issues; GCOF aims to address radically interdisciplinary challenges to the genetics clinic of the future at the crossroads of Health and SwafS. Partners from different fields of expertise collaborate closely on the stepping stones identified within the work packages.
2. to design a common communication and implementation strategy to further the implementation of the MML outcomes and recommendations; The GCOF project has established a communication and implementation strategy which operates on three levels:
• Enabling a process of mutual learning and information exchange among the interdisciplinary network of partners
• Dissemination of the GCOF concept and project outcomes by the consortium partners towards their professional communities
• Communication with broader constituencies
to contribute to relevant initiatives and policy developments at local, national and European levels; While the internal and external communication activities described above are all important to achieve the expected impacts of the GCOF project, the biggest impact may be ‘below the surface’ of these activities: the wider community is becoming aware of the relevance of the GCOF-concept, particularly it’s ‘stepping stone approach’ and its focus on radical interdisciplinarity. As several partners have indicated, many of their activities have been performed ‘in the spirit’ of GCOF, suggesting a commitment to these ideas beyond the project lifetime. As a clear indication of this commitment, the clinical genetics department at UMCU have formally initiated an implementation strategy towards becoming the first genetics clinic of the future.















































































































































































































































































































































































































































































































































Society is faced with a wide variety of rapidly evolving innovation and intricate policy problems that demand complicated choices between possible solutions.
































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Website & more info

More info: http://geneticsclinicofthefuture.eu.