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 public and the NHS, according to a new report. ‘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.
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 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.
The project found 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.
While there was enthusiasm and support for genomic medicine, the public set limits on how genomic data, and information derived from it, should be used. Genetic engineering, use of genomic data to differentiate groups within society, and for predictive insurance tests and targeted marketing were regarded as unacceptable. Participants wanted assurances that a robust governance framework and consent process would be put in place to make the intended use of their data clear.
Professor Michael Parker, Director of the Wellcome Centre for Ethics and Humanities, who co-authored the forward to the report 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.’
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.’
Find out more about the report on the Ipsos MORI website.