FAQs about how we are working with industry

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. It has always been the case that medicines and diagnostics are developed outside the NHS and government by the private sector.

Currently, 13 pharmaceutical, biotech and diagnostic companies have all agreed to come together and work in collaboration to form the Genomics Expert Network for Enterprises Consortium – or for short, ‘GENE’ Consortium.

Members of the consortium are pooling their knowledge, people and financial resource to work together on research studies of common interest for the duration of the industry trial. Members of the consortium have been given carefully controlled access to a set of whole genome sequences and corresponding de-identified health information about participants in the project. All members of the consortium will have to share the results of their analysis with everyone during the industry trial.

Running an industry trial will enable members of the consortium 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 and in a format that is compatible with their research and data systems. They are acting as critical friends and have already made many helpful suggestions which will help increase the likelihood of successful research in the future for all those using this landmark data set. The requirement on all members of the consortium to share their learning and results in a collaborative environment will ensure that the 100,000 Genomes Project and its partners can turn research findings into treatments, diagnostics and benefits for patients as soon as possible.

This dialogue between members of the consortium and Genomics England during the trial will also be constructive as it will enable Genomics England to decide how best to work with industry in the future once the trial concludes.

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 consortium participating in the industry trial will not be accessing and carrying 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.

The GENE Consortium is open to a wide range of pharmaceutical, biotech and diagnostics sector companies in the life sciences sector. The membership fee for large companies (with a market capitalisation over $1 billion) is £250,000 (plus VAT) per company.

As well as contributing financially, these companies will also have to commit a number of employees, such as scientists and bioinformaticians, to the consortium. With other resources, such as the secondment of staff, Genomics England anticipates that the total investment from each company will be in the region of £500,000 (plus VAT) for the collaboration. Genomics England has always been clear that the charges should not prevent small companies or start-ups with great ideas from joining the consortium. In the spirit of actively encouraging them to get involved, Genomics England has reduced the fee for those with a market capitalisation below $1 billion to £25,000 (plus VAT).

Genomics England will also be collaborating with bioinformatics companies to help automate analysis of the genome data to improve efficiency, speed and accuracy.

The charges will be used to cover some of the costs of providing storage, analysis and security for the data.

Companies who are members of the consortium 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. Companies who are not part of the consortium will not be allowed to work within the GeCIP environment.

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

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

Genomics England is categorically not selling participant’s genomes or their medical data. We are charging companies to participate in the GENE Consortium and the industry trial because providing storage, security and analytic services is costly and it is right that companies using the data should contribute to these costs. 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.

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