Genomics England is beginning a dialogue to explore public aspirations, concerns and expectations about the development of genomics and genomic medicine in the UK.
It will bring up to 100 members of the public together with clinicians, academics and industry figures to discuss in depth the science and issues of genomic medicine.
This dialogue takes place at an important time for the 100,000 Genomes Project – by the end of this year, the project will have sequenced 100,000 genomes from 70,000 NHS patients affected by a rare disease or cancer.
The ambition is then to embed genomic medicine into the NHS, so that it becomes part of routine care and treatment, so that everyone can benefit.
The project will last for eight months, and includes a rapid literature review, a stakeholder workshop and public dialogue workshops.
An oversight group will bring independent scrutiny to the project.
Chairing the oversight group is Dr Anna Middleton, Head of the Society and Ethics Research Group at the Wellcome Genome Campus in Cambridge.
She said: “We know that general public awareness and understanding about genomic medicine is quite low. But what I want us to gain through this dialogue is a picture of what public expectations might be, and in particular what patients using the NHS think they should offer in return for their healthcare – their side of this ‘social contract’.”
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