This is a blog post from Simon Wilde, who was the project lead of the dialogue at Genomics England, reflecting on the experience of running the Genomic Medicine public dialogue.
Genomics – studying a person’s complete DNA sequence and understanding how this affects both good and bad health – has enormous potential for changing our healthcare systems, which for most of us here in the UK, means the National Health Service. With this in mind, Genomics England was set up in 2012 to sequence 100,000 genomes from NHS patients and their families with rare diseases, and cancer, to look at how the new science of genomics could be embedded into the NHS in a sustainable, efficient and effective way. Genomics England’s aims right from the start were to create an ethical and transparent programme based on consent; to bring benefit to patients and set up a genomic medicine service for the NHS; to enable new scientific discovery and medical insights; and to kick start the development of a UK genomics industry.
With an ambition of this scale, the complexities and challenges are not just logistical ones. The project’s chief scientist, Professor Sir Mark Caulfield, puts it like this: “we need to support healthcare professionals as they work with patients to discuss the risks, benefits and other implications of genomic medicine with patients and the public. We need to describe clearly how genomic data will create a feedback loop that benefits both research and clinical care. Building trust in this exciting and revolutionary area of medical science is absolutely essential to its success.”
Involving participants in all stages of the 100,000 Genomes Project has been instrumental in putting a trusted system in place, and the sequencing of the 100,000th genome in December 2018 was the ‘end of the beginning’ for both participants and the wider health research community.
Understanding, responding to and taking account of the public’s views on genomics is essential and a key part of Genomics England’s work has been to communicate to, and engage with, both participants in the project as well as the wider public.
So when Chief Medical Officer Dame Sally Davies, in her 2016 Annual Report, Generation Genome, outlined what developments in genomics might mean for the way the NHS works in the future, and what the obligations and responsibilities of professionals and patients might be, we were very glad to respond to a key recommendation in that report – that there should be a public dialogue on what this new ‘social contract’ between the public and the NHS might look like, addressing areas such as consent, the way information is used in the care of patients and their families, and the responsibilities of both professionals and health systems.
Genomics England, the Scottish Genomes Partnership and the UKRI programme Sciencewise funded the dialogue project and commissioned Ipsos Mori to undertake an inclusive and comprehensive public dialogue. The project was guided by an Oversight Group, chaired by Professor Anna Middleton.
You can read the full report, A public dialogue on genomic medicine: time for a new social contract? on the Genomics England and Sciencewise websites. It contains a wealth of fascinating and useful information about what the public’s views are. It describes some of the core values that people see in terms of this ‘social contract’ between the public and the NHS of solidarity, reciprocity and altruism, and also describes some of the public’s ‘red lines’ around the use of genomics for genetic engineering of humans, use in a surveillance society and for insurance and marketing purposes.
A public dialogue of this scale, whilst being absolutely invaluable, is also a major call on the resources of an organisation, and so right from the start we wanted to be sure that the findings from the dialogue fed into the right policies and strategies for Genomics England, and as many other organisations involved in genomics as possible. Sciencewise’s main reason for existence is to ‘support socially informed policy making’ and so we were careful to make sure that everything was in place for the dialogue to have as big an impact as possible.
From a project management perspective, I think there were several ways in which we were able to maximise the impact of a dialogue such as this. In no particular order, they are:
Sciencewise’s guiding principles for public dialogue stress that the dialogue should be ‘well timed in relation to public and political concerns and ‘commence as early as possible in the policy/decision process.’ The CMO’s report, the announcing of the 100,000th genome sequencing and the announcement of the roll-out of the Genomic Medicine Service all provided the ‘hook’ to engage policymakers and other stakeholders in the project
Oversight and Stakeholder Engagement
we were incredibly lucky that around 15 very knowledgeable and committed people agreed to form our oversight group that met regularly to discuss the project, provide input to the dialogue design and suggest materials for the public workshops. This meant that the project was asking the relevant questions of the public – the kind of questions that policymakers wanted answers to. It was important too that we had a range of views – not just from those strongly supportive of every aspect of genomics. We also made time to consult a wider group of stakeholders including data rights organisations, healthcare professional bodies and charities representing patients and carers.
Expert and specialist participants
The public workshops would not have been possible without many people, from professors of genomics to genetic counsellors to participants in the 100,000 Genome Project, willing to volunteer their time to take part in the workshops to talk through and discuss the various issues with members of the public. Our members of the public who took part in the workshops told us that at the start of the project they knew very little about genetics and genomics, but by the end they felt they had a good understanding of the science, and more importantly the ethical and other issues around genomics. Finding the right ‘experts and specialists took time – much more than expected – but was very much worth the effort.
Staging of the dialogue
Right from the beginning we decided to take a stepwise approach to the dialogue – beginning with some work to understand and collate what information was already out there on public attitudes to genomics (relatively little!) and the use of personal data in research (much more – largely thanks to organisations such as Understanding Patient Data). Taking this step by step approach to the dialogue meant that we could alter plan to suit our needs, and avoid duplication of effort. For example, we were able to include some research on different ethic groups’ attitudes to genomics, and add a dialogue session in Scotland to the project. Sometimes this didn’t sit well with the quite rigid procurement and contractual processes – but it was worth the headaches!
One of the requirements of Sciencewise funding is that the project is independently evaluated. We chose our evaluator carefully and they were able to add a lot of value to the project as it progressed.
We spent a lot of time talking to senior staff both at Genomics England and other bodies such as the Department of Health and NHS England. This was really important to manage expectations of what the dialogue could and could not deliver, and prepare policymakers for the findings as they came in
We’ve been delighted with the response to the dialogue report, and heartened by the large amounts of really useful and valuable information it has given us. There are a number of ongoing projects at Genomics England that the findings are already being used to inform, and we have been having some really useful conversations with government, charities and other organisations about next steps.
To read more about this project, read the project page.