A major new dialogue has found the public are enthusiastic and optimistic about the potential for genomic medicine but have clear red lines on use of data
The more widespread use of genomic medicine – applying knowledge about a person’s genetic information to guide and improve their healthcare – will change the relationship between the UK public and the NHS, according to a new report launched today. ‘A public dialogue on genomic medicine: time for a new social contract?’ explored public aspirations, concerns, and expectations about the development of genomic medicine in the UK. It was commissioned by Genomics England and co-funded by UK Research and Innovation’s Sciencewise programme in support of public dialogue on scientific and technological issues.
Led by Ipsos MORI’s Public Dialogue Centre, in-depth discussions between experts and members of the public across the country revealed widespread optimism about the potential of genomic medicine to improve our health and develop new and better treatments for disease and ill health. However, the report found that the delivery of genomic medicine will need widespread support and engagement from the public, clinicians, and researchers alike.
The dialogue reported that advances in genomic medicine may change public expectations around donating their data; and that clinicians and researchers will need to be equipped with ‘genomic literacy’ to support patients and donors and explain the ever-closer relationship between research and clinical care. The ways that medical charities, research organisations, and industry work with the NHS, and the importance of basic biological research, will also need to be better explained.
The NHS was founded on a common set of principles and values, as outlined in the NHS Constitution, that bind together patients, the public and NHS staff, helping the service work in an effective and equitable way. The new dialogue revealed that although participants were unfamiliar with the terminology around this ‘social contract’, they had very clear perceptions of how the NHS works and the ‘deal’ between the service and patients.
The report recommends that these advances from genomic medicine– particularly where they affect the core values of reciprocity, altruism, and solidarity (see notes below) – should be enshrined in the NHS Constitution.
The project also found that whilst there was widespread enthusiasm and support for genomic medicine, the public also have clear limits for how far they thought genomic data, and information derived from it, should be used. These red lines included genetic engineering, use of genomic data to differentiate groups within society, and for predictive insurance tests and targeted marketing. Participants wanted assurances that there is a robust governance framework and consent process in place that makes it clear what the intended use of their data is.
The Chief Medical Officer for England, Professor Dame Sally Davies, said:
I am delighted to see the publication of this important and timely report. It is increasingly clear that developments in genomics have the potential to significantly improve human health. Furthermore, the ability to provide the best care for patients can be greatly enhanced by comparing their data with that of many others. These benefits, which depend upon the safe collection, secure storage, and controlled use of patient information, are only fully achievable and sustainable in the context of well-founded public trust and confidence.
Professor Michael Parker, Wellcome Centre for Ethics and Humanities, University of Oxford, said:
This report highlights the crucial role that ethics and participant engagement play in establishing and maintaining public trust in genomics. It is essential reading for everyone with an interest in genomic and data-driven medicine. It presents the results of an inclusive and thorough process of public dialogue and makes a vital contribution to ongoing discussions about genomic medicine. It reveals that the relationship between the NHS, patients, and the public is currently understood in terms of three core values: reciprocity, altruism, and solidarity. These values are likely to continue to inform the understanding of the appropriate relationship between medicine, research, and society as genomic medicine plays a more central role in healthcare.
Professor Mark Caulfield, Chief Executive of Genomics England, said:
This dialogue is enormously important and timely as genomic medicine becomes mainstreamed in healthcare. 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 our pioneering 100,000 Genomes Project was instrumental in putting a trusted system in place.
Sarah Castell, Head of Futures at Ipsos MORI and the dialogue lead, said:
The members of the public at our events put a lot of work into this dialogue as they uncovered the ethical and practical dilemmas which the growth of genomics might bring. They questioned experts, explored case studies and examples, and developed their own views with great insight and flexibility of thought. By the end of the sessions, participants expressed the same requirements from genomics as the public often asks of new technologies: they want genomics to bring clear benefits, to avoid unintended negative social consequences, and for those benefits to be shared fairly across all of society.
Simon Burall, Programme Director for Sciencewise, said
Sciencewise has supported over 50 public dialogues on a wide range of scientific innovations. This project with Genomics England demonstrates why government departments invest in deliberative dialogue. By bringing together a diverse and inclusive sample of the public to engage deeply with the issues raised by the latest scientific advances, policy makers can get beyond the loud voices in the debate to gain insight into public perspectives. This helps them to understand how the public balances the trade-offs between the benefits that many of these innovations bring, and the societal harms that may also result, leading to better policy and a more trustworthy system of governance for the technology in question.
Health Minister Nicola Blackwood said:
Download the report (PDF) here.
Genomic medicine has enormous potential to transform healthcare by diagnosing diseases earlier, personalising care to individual patients, and giving researchers the crucial information they need to develop cutting-edge treatments of the future. We are determined to embrace it through our Long Term Plan for the NHS. It is absolutely vital people have the confidence that their data will always be protected to the highest standards – and the Government has introduced tough new legislation to make this happen.
The key findings and conclusions can be found on the Ipsos MORI website.
As part of the project, Ipsos MORI, Genomics England and Sciencewise carried out a evidence review which summarised other recent findings on public attitudes to genomics, and identified areas for future research.
The project was independently evaluated by Ursus Consulting Ltd. View the public dialogue evaluation report (PDF).
The participants in the dialogue had very clear perceptions of why the NHS works. These were based on 3 concepts:
- Reciprocity – the NHS will provide the best available care, in return for the public valuing that care
- Altruism – the public want healthcare and research to benefit others as well as themselves
- Solidarity – everyone pays their fair share and contributes individually to reducing the public health burden
- Ninety-seven members of the public, and thirty experts came to evening and reconvened day-long Saturday events, held in Coventry, Edinburgh, Leeds, and London.
- A proportion of each group in each location was reconvened to a final Genomics summit event in London (n=23 in total), where the group was again joined by experts.
- A total of forty-three experts attended the dialogue workshops and the Genomics summit.
- A rapid light-touch literature review was conducted to inform the dialogue materials and to ensure that the project built on the work of previous social research on attitudes to genomics. A stakeholder workshop including 19 participants also helped shape the framing of the dialogue, the materials and examples given to workshop participants.
The dialogue method involves in-depth discussion with relatively small groups of people; participant views are therefore not representative of the views of the wider public in the same way as a large scale survey. Nevertheless, the depth of discussion, time for reflection, scope of information provided, and interaction with experts, means that the views expressed here can be taken as a good indication of how an informed public might respond to complex ethical and practical questions around genomics.