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

Ipsos, Genomics England and Sciencewise have published a literature review which summarises gaps in our knowledge about public attitudes to genomics, and recommends areas for future research.

Literature review tells us what to ask the public about their views of genomics

What do the public think about the future of genomic medicine in the NHS? How far do they understand what is possible, and what are their expectations, aspirations and concerns for this revolutionary new medical science in future? 

Ipsos, Genomics England and Sciencewise today publish a literature review which summarises gaps in our knowledge about public attitudes to genomics, and recommends areas for future research. The review will inform the design of a large-scale public dialogue.

Large-scale genomics public dialogue this autumn

Genomics England, with support from Sciencewise, has commissioned Ipsos to carry out a public dialogue starting this October, exploring how the public feel that the NHS should best take forward genomic medicine into its national programme of clinical care.  Workshops will take place across England and around 90 members of the public will explore the technical and ethical aspects of genomics, in depth over several days, and in discussion with experts, patients and other stakeholders. 

The project will uncover public views of the social contract around the provision of genomic medicine; what the public feel that they should expect from genomics providers, and what they feel should be expected of public and patients in return.

The dialogue is designed to build on existing research in this field, and fill gaps in public attitudes work which has already taken place. As such, Ipsos conducted a brief and rapid literature review showing what is already known by the public, and also the views of experts, clinicians, and patients on some of the ‘live issues’ in genomics. 

Seven areas of interest

Though it is not an exhaustive review, this short report identifies seven areas where more research is needed and the implications for the dialogue. These are summarised below. 

1.    Awareness of genomics is low: we need to help participants understand key ideas like: what are genes? What is data science? How does the NHS work at the moment?

2.    Younger people and ethnic minorities sometimes have different views about genomics and we should listen to their voices in particular.

3.    Genomics is associated with both benefits and risks.  There are some uncertainties which make the benefits and risks hard to weigh up, such as the scope of impact of genomics long term; future findings from genomics which are unknown today; how quickly the science will develop; and how genomics will be used outside medicine by governments, insurers and others.  

4.    Important areas for public debate include how the findings of genomics should be conveyed to patients and, crucially, their families; and what do people consent to, and the role of advice and counselling in this.

5.    Future research should ask the public their views on insurance uses of genomic information, the role of public and private partnerships, and the role of international data sharing. 

6.    Public, patients and clinicians are all concerned about the current and future capabilities of the NHS. The dialogue will need to explore how the NHS can develop the skills and capacity required for a genomic medicine service – and what public expectations are. 

7.    While we know a lot already about how to communicate key medical, data and genetic concepts, the dialogue should cover the best ways to explain how genomics will be ‘rolled out’ into the NHS more widely. 

What do you think we should ask the public about genomics? 

We are currently developing our materials for our dialogue, so, whether you are involved in genetics, have an interest in it or have been affected by some of the issues, we’d be delighted to hear your thoughts on our report and what we should cover in our dialogue.

More information on our genomics dialogue 

For more information on the dialogue or to tell us what you think about our report, please get in touch with Simon Wilde, Communications, Genomics England, [email protected] / 07793 142 501 or Graham Bukowski, Ipsos Public Dialogue Centre, [email protected] / 0203 059 4678. 

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