On 26 March 2015, Genomics England launched a groundbreaking collaboration with academia, NHS Genomics Medicine Centres (GMCs) and the biomedical and pharmaceutical industries. Known as the Genetics Expert Network for Enterprises (GENE) Consortium, its goals have been ambitious – to align the needs of all sectors to ensure that genomics discoveries are translated into medical treatments, and embedded into mainstream NHS care, as quickly as possible.
GENE has involved 13 private companies working pre-competitively with Genomics England. Originally envisioned as a year-long programme, it has evolved alongside the 100,000 Genomes Project and is now drawing to a close after two years of engagement. GENE has generated a wealth of understanding around how these sectors can collaborate more efficiently – and deliver more effective care.
Since starting at Genomics England in April this year, it has struck me that one of the most innovative aspects of GENE was its capacity to remove the barriers between academia, industry, government and the NHS. Breaking these silos helps us to better understand the processes needed to turn pioneering discoveries into practical treatments that can be rapidly adopted in routine care. It is both forging new ways of working and identifying where partnership can be improved.
GENE’s value has focused around key themes:
In bringing together organisations with a diverse set of interests, GENE has allowed participants to identify shared interests and concerns. In addition, GENE has acted as a bridge between researchers, the NHS and industry – pooling expertise, fostering understanding and focusing effort.
Many scientific research projects introduce industry late in the development process. This can lead to missed opportunities, such as concentrating efforts on the rapid development of new treatments and medicines. The GENE Consortium has embedded industry at the very start of the 100,000 Genomes Project − early engagement has allowed industry to provide advice and feedback, which has helped to steer the direction of the project.
Industry contributions include identifying aspects of the project that will deliver a return on public investment – i.e. the knowledge base that the project is generating. In better understanding this, Genomics England is looking at the economic – as well as health − benefits that genomic medicine can bring to the UK. In providing industry with a mechanism through which it engages with genomics research, it is also helping to establish the UK as an attractive place for this research.
Patients and industry
research commissioned as part of the ‘Genomics Conversation’ in 2016 showed mixed results in terms of patients’ attitudes to industry involvement in the Project. GENE has provided an opportunity to explore public perceptions of industry involvement in the Project specifically, and medicines/treatment development more generally − and how it can work to address them and build trust.
As well as areas where collaboration is working well, GENE has helped Genomics England to see where improvements can be made. Industry members identified, amongst other aspects, the need for: a clearer industry focus; further enhancement of the analysis platform; the inclusion of researchers from the Genomics England Clinical Interpretation Partnerships (GeCIPs); and a greater emphasis on patient recruitment and engagement.
Although GENE is now coming to an end, participants are keen that a successor body is established to strengthen collaborative working on the 100,000 Genomes Project. Genomics England is working with members to scope out this new collaborative forum – learning from and building on the legacy of the GENE Consortium.
– Professor Joanne Hackett