Putting Your Genome to Work: For the NHS, for Industry, for the UK Post-Brexit

Progress Educational Trust
Venue: Amnesty International, 17-25 New Inn Yard, London EC2A 3EA
21 March 2018
This public event was organised by the Progress Educational Trust (PET) and was supported by the Medical Research Council.
The Government's Industrial Strategy White Paper Building a Britain Fit for the Future sets out an ambition for the UK to 'be the world's most innovative economy' and play a leading role in a 'fourth industrial revolution... characterised by a fusion of technologies that is blurring the lines between the physical, digital and biological worlds'.
The White Paper argues that 'the government, the NHS and charities can all contribute to make the UK an attractive location for businesses to invest and for patients to benefit'. According to the first in a series of Sector Deals published in the wake of the White Paper, the Life Sciences Sector Deal, 'a new genomics industry is beginning to emerge... with UK companies like AstraZeneca, Cambridge Epigenetix, Genomics plc and Congenica working with Genomics England'.
The Sector Deal discusses investments from and agreements with a variety of companies, involving the whole genomes of around 70,000 participants in the 100,000 Genomes Project and around half a million participants in UK Biobank. GSK and others have committed to sequencing the whole genomes of the latter, while a separate consortium coordinated by Regeneron Pharmaceuticals will sequence the exomes (partial genomes) of these same participants in the shorter term.
Health Secretary Jeremy Hunt says the Sector Deal 'proves that life science organisations of all sizes will continue to grow and thrive in the coming years, which means NHS patients will continue to be at the front of the queue for new treatments'. However, there remains a degree of public unease about the involvement of commercial interests in health. This unease may be intensified at a time when how best to fund and manage the NHS, how best to approach Brexit and who can be trusted with health-related data are all matters of ongoing contention.
Questions explored at this event included:
How can we ensure that the NHS, and its patients, derive reciprocal benefit from scientific and medical advances that involve people's genomic data?
How can we address the view that there is, or should be, a clear partition between public and private involvement in health, when the development of medicines and diagnostics has always been led by the private sector (and now the Industrial Strategy involves closer collaboration)?
Are some life science industries more palatable than others?
Given the impact on public contracts when the construction and outsourcing firm Carillion collapsed, are there any such risks associated with companies that dominate markets in genomics?
What can we learn from the world of direct-to-consumer genetic testing, where consumers often consent to their data being used in research (to the commercial benefit of the testing company)?
Finally, can we learn anything from proposals by a US company to treat members of the public neither as patients nor as consumers but rather as 'data owners', who will use blockchain technology to make their genomic data accessible (or inaccessible) to whomever they wish?

Dr Eliot Forster
Chair of MedCity
Dr Edward Hockings
Founding Director of Ethics and Genetics
Dr Athena Matakidou
Head of Clinical Genomics at AstraZeneca's Centre for Genomics Research, and Consultant in Medical Oncology at Cambridge University Hospitals
Dr Jayne Spink
Chief Executive of Genetic Alliance UK

Sarah Norcross
Director of PET

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