FAQs about how we are working with industry

Industry is critical in rapidly translating pioneering research into mainstream care. It is the biomedical and pharmaceutical industries that have taken pioneering research and turned it into many of the medical innovations − such as the X-ray machine, MRI scanner and penicillin – that we take for granted today.

Without the involvement of industry, the NHS and Genomics England would not be able to get the new medicines, treatments and diagnostics for patients that should come from this project. Medicines and diagnostics are always developed outside the NHS and government by the private sector.

Genomics England works with industry through its Discovery Forum. The Forum provides a platform for collaboration and engagement between Genomics England, industry partners, academia, the NHS and the wider UK genomics landscape.

Companies have come together within the Discovery Forum to work in a pre-competitive environment with access to a selection of whole genome sequences. Genomics England also works with companies that specialise in laboratory and data analysis, so that the 100,000 Genomes Project can benefit from cutting edge advances in handling Big Data.

The Discovery Forum builds on the GENE Consortium, which completed its work in June 2017. GENE involved 13 pharmaceutical, biotech and diagnostic companies which worked collaboratively on research studies of common interest. Members of the consortium were granted carefully controlled access to a set of whole genome sequences and corresponding de-identified health information about participants in the project – committing to share results of their analysis with everyone during the industry trial.

The Discovery Forum, and GENE before it, allows industrial partners to report back to Genomics England on what aspects of the data are proving to be most useful to their research studies, what data is missing and how the data should be collected and developed further so it is captures what industry needs in a format that is compatible with their research and data systems.

These partners act as a ‘critical friend’ and have already made many helpful suggestions to increase the likelihood of successful research in the future for all those using Genomics England’s landmark data set.

Ultimately, the Discovery Forum will help the 100,000 Genomes Project and its partners to turn research findings into treatments, diagnostics and benefits for patients as soon as possible.

Yes. All participants who have agreed to take part in the 100,000 Genomes Project will be explicitly asked by the trained healthcare professional taking their consent if they are willing for commercial companies to access their de-identified genome and health data. For further information, please see our FAQ on ethics and consent.

Companies in the Discovery Forum do not access and carry out analysis on individual participant data, but will work on a limited amount of aggregated data – or the data of many thousands of participants at any one time.

As the Discovery Forum is a collaborative venture, no fees are levied on participating organisations.

Companies who are members of the Forum work with the researchers, clinicians and analysts who have been successful in joining Genomics England’s Clinical Interpretation Partnership (GeCIP) within a managed framework. This partnership between industry, the academic research community and clinicians will help to accelerate the development of new diagnostics and treatments for NHS patients as all findings will have to be shared.

Funders, researchers, trainees and clinicians will take part in the 100,000 Genomes Project through the Genomics England Clinical Interpretation Partnership (GeCIP). There is no charge for this.

All members of the Forum are obliged to publish all findings and research at the point at which intellectual property for any product is protected, in common with best practice in the pharmaceutical industry.

Genomics England is not selling participant’s genomes or their medical data.

For patients to benefit from this landmark project, it is vital for companies to be involved because, without their expertise, the NHS and Genomics England would not be able to get the new medicines, treatments and diagnostics for patients that should come from this project. It has always been the case that medicines and diagnostics are developed outside the NHS and government by the private sector.

If you are a researcher at the clinical-research interface, you can find more Frequently Asked Questions here.

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