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GCOF Report Summary

Project ID: 643439
Funded under: H2020-EU.3.1.

Periodic Reporting for period 1 - GCOF (A stepping stone approach towards the Genetics Clinic of the Future)

Reporting period: 2015-01-01 to 2016-06-30

Summary of the context and overall objectives of the project

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 from the beginning of the project to the end of the period covered by the report and main results achieved so far

In the first reporting period, the GCOF project has made significant steps towards its overall aim to ensure that the clinical implementation of genome technologies is relevant and responsive to the needs of all. The progress towards the objectives as listed in the DoA has been as follows:
− To ensure that the future implementation of high-throughput genome technologies is relevant to the needs of patients and responsive to the interests and concerns of citizens and stakeholders;
Responsiveness to the needs of patients and citizens is integrated in the design of the GCOF project. Patient organization EURORDIS has been involved in the design and execution of project activities, notably in WP2 and 4. Open Science and Observa have set up citizens focus groups as part of the engagement activities in WP5. UOXF and CIFS will organize a workshop at the FARGEN summit. The findings of these activities will feed back into the design of project activities in the second period of the GCOF project. For instance, the discussion groups with various stakeholder groups have already raised an issue of concern for the genetics clinic of the future – the use and management of personal genome data. This issue will be a key part of the upcoming simulation project and in the work on data sharing (WP2 and 4).
− To engage all relevant groups in constructive dialogue on the genetics clinic of the future by enabling ‘radically interdisciplinary’ collaborations between genomics researchers, clinical geneticists and other medical specialists, bioinformaticians, patient representatives, policy makers and experts from ethics, social science and law.
All project activities seek to enable radical interdisciplinarity. All project partners, with widely divergent backgrounds, are involved from the start of the activities. During project meetings such as the kick-off meeting all partners weigh in on the design of new activities, highlighting the ethical and social dimensions of technical designs and vice versa. The simulation project is another prime example of radical interdisciplinarity: the project seeks to explore the technological, psychological, personal, ethical, societal and clinical opportunities and uncertainties of using genetic information in a medical context and beyond, using the whole genome data of consortium members. Interestingly, this activity has already made several consortium members more aware of the ethical and psychological complexities of whole genome sequencing, and conversely made others more aware of the technological and medical opportunities.
Several activities have been undertaken to engage a wider circle of stakeholder groups in a constructive dialogue on the genetics clinic of the future: ESHG workshop (WP1, WP4), biobank survey (WP4), ambassador meetings (WP5), policy workshops (WP6).

− To implement key Science with and for Society (SwafS) issues (ethics, patient and citizen involvement, education, communication and public engagement and policy development) in the genetics clinic of the future, ensuring that ethical reflection and stakeholder involvement do not occur in parallel, but are effectively integrated in the core of the project.
Implementation of key Science with and for Society (SwafS) issues is ensured by the central involvement of patient organization EURORDIS, citizen groups and SSH expertise. The GCOF Strategy (WP1) puts patients at the centre of the genetic clinic of the future and envisages seamless integration of moral and technical expertise. The simulation project (WP1) integrates all SwafS issues. Other activities and tools specifically focus on one or several SwafS issues, like the Automatable Discovery and Access Matrix (ADA-M) that focuses on data use (WP2), the EURORDIS focus groups on patient perspectives (WP4), the ambassador meetings to involve other stakeholder groups (WP5), and the cost effectiveness calculations (WP7).

− To establish a robust communication and implementation strategy that implements the project’s outcomes and recommendations in research and clinical practices as well as policy developments, outlining opportunities for a more responsive health research and innovation system.
In the first period of the GCOF project, the groundwork has been laid for communication and implementation of the project findings. Over and beyond the communication activities such as the project website (WP1), conference sessions and workshops and media outreach, the project findings will be implemented in the strategy of the clinical genetics department at UMC Utrecht (see also section 2: Update of the plan for exploitation and dissemination of results below)

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

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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