A Genomics England public dialogue, co-funded by Sciencewise, has published its final report. The dialogue explored public aspirations, concerns, and expectations about the development of genomic medicine in the UK. This dialogue was commissioned as the development of genomic medicine – applying knowledge about a person’s genetic information to guide and improve their healthcare – increases in potential and availability.
This dialogue saw in-depth discussions between experts and members of the public across the country which found widespread optimism about the potential of genomic medicine. However, the report also finds that the delivery of genomic medicine will need widespread support and engagement from the public, clinicians, and researchers.
The discussions explored the complex issues of how advances in genomic medicine might change public expectations around donating their data and how the NHS ‘social contract’ with patients should enshrine core values of reciprocity, altruism and solidarity.
The dialogue found that whilst there was enthusiasm, 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.
To find out more, read the report.