The Progress Educational Trust event 'Putting Your Genome to Work: For the NHS, for Industry, for the UK Post-Brexit' took place at Amnesty International in London on 21 March 2018.
The background to the event was the Industrial Strategy White Paper, 'Building a Britain Fit for the Future', which aspires see the UK become 'the world's most innovative economy' across a number of high-tech sectors, including life sciences. The Life Sciences Sector Deal – the first in a series of such deals published in the wake of the white paper – discusses investments from and agreements with a variety of companies, involving the genomes of participants in the 100,000 Genomes Project and UK Biobank.
Health Secretary Jeremy Hunt said the sector deal 'means NHS patients will continue to be at the front of the queue for new treatments'. However, many people have reservations about the involvement of commercial interests in health, and questions about how best to fund and manage the NHS, how best to approach Brexit and who can be trusted with health-related data need to be answered.
Each speaker gave a 10-minute presentation and then all four responded to audience questions.
The first speaker, Dr Eliot Forster, is chairman of MedCity, which promotes the life sciences in the 'golden triangle' of London, Oxford and Cambridge, and was previously chief executive of a biotechnology firm. He introduced the white paper and the sector deal, and explained why the UK is well placed to excel in life sciences, especially genomic medicine.
Forster argued that the fact that the UK has the largest patient population under single healthcare provider (the NHS) in the world, a multi-ethnic population and world-class research facilities are all in the UK's favour. 'Brexit offers us an opportunity to lead the world in regulation through life sciences and especially cell therapies, gene therapies and regenerative medicine,' Dr Forster said.
The second speaker was Dr Athena Matakidou, head of clinical genomics at AstraZeneca's Centre for Genomics Research, and a practising consultant in medical oncology at Cambridge University Hospitals. Her talk focused on the advantages of personalised medicine in clinical trials and the benefits that access to very large datasets could bring to scientists' understanding of diseases.
Next was Dr Edward Hockings: an academic and founder of Ethics and Genetics – an independent non-profit organisation which champions democratic participation and transparency in the governance of biotechnology and the life sciences. 'There is no reason why the UK cannot be at the cutting edge of harnessing the potential of this unique asset… and at the same time lead by example by implementing a truly democratic bioscience,' he told the audience.
The final speaker was Dr Jayne Spink, chief executive of Genetic Alliance UK, a charity that brings together more than 200 patient support organisations, as well as Rare Disease UK and SWAN UK (which supports families affected by 'syndromes without a name' of likely genetic origin). She shared some insights into her members' attitudes to sharing their data, as well as hopes and fears for the future of genomic medicine.
There was consensus among the panellists about the difference genomic medicine will, and has already, made in healthcare. Dr Forster compared the explosion in genomics to the renaissance, saying 'we are in the middle – maybe just the beginning – of a biomedical revolution'. Dr Hockings agreed: 'we are witnessing human history in the making.'
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'. Some have interpreted that to mean that after Brexit, the UK could gain a competitive advantage over European Union states by moving away from the EU's risk-averse 'precautionary principle', which was instrumental in restricting genetically modified organisms.
Dr Spink cautioned against regulatory divergence, at least in the field of clinical trials. She explained that for a treatment to be tested there needs to be a sufficient patient pool to provide trial participants and potential customers for the drug. The UK alone represents only three percent of the global healthcare market, so regulatory divergence would make the UK a less attractive place to conduct trials. This could mean that UK patients wait longer to receive new treatments.
She and Dr Forster agreed that regulation has in recent years balanced the precautionary principle against the patient voice when assessing risk and benefit of trials. There was agreement that while the safety of research participants is paramount, that the informed wish of patients to take part should be respected.
Is genomics the answer to everything?
A number of audience members expressed doubts or hopes about the promise of genomic medicine. A specialist who had been told that genetics would bring a cure for diabetes 'in the next five years' for the last 25, was understandably unexcited about the possibility.
Dr Matakidou explained that genetics will not provide a complete answer for every disease, but genomics is powerful tool to better understand diseases – it gives us valuable glimpses into biology.
She said that for most diseases the common genetic variants have only a small influence on risk, and that the causal 'driver' mutation rate is likely to be low so large numbers of genomes will need to be analysed to identify them.
Dr Forster agreed, that for rarer diseases, the more genomes the better, and for ultra-rare conditions – such as some chromosome disorders – global sharing may be beneficial to link records, as there may be only a handful worldwide with the same variant.
Dr Spink concurred, saying that for the rarest conditions 'a never-ending diagnostic odyssey cannot be good thing, and even if diagnosis not actionable it can help prevent harms of misdiagnosis'. It can also help patients gain recognition, support and understanding, she said.
Patient involvement and consent
In her presentation, Dr Spink asked the question that was in my mind: which bodies do we trust with our data and why? According to Dr Spink, most Genetic Alliance UK members appreciate the benefits of data-sharing and welcome the benefit to others as well as themselves; 90 percent of members surveyed were happy for data to be used broadly for patient benefit.
Interestingly, they rated trust in different kinds of institutions and found that the NHS is widely trusted, followed by universities and charities. Less well trusted were companies and the Government, with fears that where there is a profit to be made, patients will not be put first. Dr Hockings emphasised that patient data should not be shared beyond what was originally intended and agreed to, and reminded the audience that the House of Commons Science and Technology Select Committee had reached the same conclusion.
An audience member suggested that if people are going to be asked to share their data that it should be taught about in schools. Dr Hockings suggested that the huge budgets of endeavours like the 100,000 Genomes Project should be matched for awareness-raising among the public. Professor Peter Braude, speaking from the audience, responded that the 100,000 Genomes Project has put huge amounts of information online, asking what more can they realistically do?
Dr Spink said it was imperative to distinguish between direct-to-consumer testing and testing in NHS. In a medical setting, pre- and post-test counselling and thorough consent procedures are standard.
Dr Hockings did say that he found the approach of firms such as Nebula Genomics interesting – using blockchain technology to allow individuals control over who they share their data with and for what purpose. However, Dr Forster implied that the fear of a 'spectre' trying to do something nefarious with personal data was unrealistic. An audience member shared her opinion that when we donate blood, we don't decide who will recieve it, or for what purpose it should be used. She suggested that people should allow their data to be shared as a public good.
The Progress Educational Trust is grateful to the Medical Research Council for supporting this event.