Genomics England, and Ipsos MORI have published a literature review which summarises gaps in our knowledge about public attitudes to genomics and recommends areas for future research.
This is part of the Public Dialogue on Genomic Medicine, commissioned by Genomics England with support from the Sciencewise programme.
The literature review was done to help map out areas of focus for the upcoming public dialogue workshops which are beginning this October. The workshops will bring together roughly 90 members of the public from across England to explore the technical and ethical aspects of genomics and discuss with experts, patients and other stakeholders.
This Rapid Literature Review identifies seven key areas of interest to focus on
- 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?
- Younger people and ethnic minorities sometimes have different views about genomics and we should listen to their voices in particular.
- 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.
- 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.
- 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.
- 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.
- 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.
To learn more see Genomic England’s website here.