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Genomics England forms industry collaboration

30 March 2015
Appeared in BioNews 796

Genomics England has announced a new consortium that will see it share data from the 100,000 Genomes Project with major pharmaceutical industry players.

Ten companies, including GSK, AstraZeneca and Roche, have signed up to be part of the GENE Consortium and, during a trial year, they will receive access to 5,000 genomes sequenced as part of the project and linked patient data.

Genomics England say they aim to identify the best ways to involve industry in the genome sequencing project in order to accelerate the use of its data for new diagnostics and gene-targeted treatments.

Genomics England executive chairman Sir John Chisholm said the organisation was 'delighted' to announce the partnership. 'We are determined that NHS patients will be amongst the first to benefit from the discoveries uncovered by the project.'

He added: 'This year we will explore how companies, clinicians and researchers can work together on the 100,000 Genomes Project - giving us a platform to expand and build upon.'

At present, Genomics England has not revealed any detail about the terms of the deal so it is unclear what financial arrangements have been made and what has been agreed about the use of the data after the trial year.

Recently, critics of the 100,000 Genome Project have expressed concern over the sharing of participants' data with commercial partners. Writing for The Guardian, Edward Hockings and Lewis Coyne found via Freedom of Information requests to the Department of Health that data given to third parties will not be fully anonymised.

Speaking to BioNews, Dr Helen Wallace of GeneWatch UK also criticised the process used to gain consent from participants of the 100,000 Genomes Project, which does not allow them to withhold their data from commercial parties.

'A major concern is that if personalised risk assessments become commercialised these can be distorted in ways that maximise the drug market, rather than improving health,' she told BioNews via email.

'Because of the broad nature of the consent, there is no process for people to consider conflicts-of-interest or decide which companies they might want to access their data for what purposes.'

Genomics England also this week announced a development in its UK-based research collaboration, the Clinical Interpretation Partnership (GeCIP). After inviting applications last November, the company has now selected over 28 teams of researchers who will work on improving diagnosis for a range of conditions. There will also be analytical and social science research covering areas such as ethics, law, health economics and the use of electronic health records.

'We hope that this unique collaboration will lead to earlier and more precise diagnoses for patients and, working with companies, will pave the way for new, more targeted therapies and treatments,' said Genomics England chief scientist Professor Mark Caulfield.

Have your say about whole genome sequencing, by taking a minute to complete the "100,000 Genomes Project Poll" on BioNews here.

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