A public dialogue on genomic medicine:

time for a new social contract?

"This report highlights the crucial role that ethics and participant engagement play in establishing and maintaining public trust in genomics"

Professor Mark Caulfield, Chief Executive of Genomics England

25th April 2019

New report published on public views of Genomic Medicine:

"A public dialogue on genomic medicine: time for a new social contract?"

This report explored public aspirations, concerns and expectations about the development of genomic medicine in the UK. It was co-funded by Genomics England, the Scottish Genomes Partnership and UK Research and Innovation's Sciencewise programme.

A Sciencewise public dialogue provides in-depth insight into citizens’ views, concerns and aspirations on issues relating to science and technology. The purpose of this dialogue was to take into account the public's priorities and concerns about the use of genomics in healthcare. This was in order to inform healthcare policy-making in Scotland and the future of genomics more broadly.

Ninety-seven members of the public, and thirty experts came to evening and day-long Saturday events in Coventry, Edinburgh, Leeds, and London. The sessions were facilitated by a team from the Ipsos MORI Public Dialogue Centre.

The in-depth discussions revealed widespread optimism about the potential of genomic medicine to improve our health and develop new and better treatments for disease and ill health.

Initially, participants had a limited understanding of genomics: almost nobody had heard of a ‘genome’ or ‘genomics’. When introduced to the ideas, however, almost all responded positively and many developed high expectations of genomics, envisaging a near-term future with new treatments and personalisation of care, and significant cost savings for the NHS. Almost all were relaxed about their health and genomic data being used in health research, provided that this was managed carefully.

However, participants had some clear limits for how far they thought genomic data, and information derived from genomic analysis, should be used. These included genetic engineering, surveillance, administrative / political uses, predictive insurance tests and targeted marketing.

© 2019 Scottish Genomes Partnership

Scottish Genomes Partnership gratefully acknowledges the funding received from the Chief Scientist Office of the Scottish Government Health Directorates and the Medical Research Council Whole Genome Sequencing for Health and Wealth Initiative.