Scientists can now edit the code of life (the genome) with relative ease and precision. Being able to change the DNA of human embryos has been hailed as a game changer for potentially curing some hereditary genetic disorders from all future generations in a family. However, for cultural, religious, or ethical reasons, some feel the manipulation of human embryos is a step too far for society. In the UK, as in most countries worldwide, it is currently illegal to perform genome editing on embryos that lead to pregnancy. Whilst the editing process is not currently 100% accurate, scientists predict that it soon will be. This means that public audiences should be brought into the conversation now so that policy makers can take account of societal perspectives.
For a week in September 2022, 21 people with personal experience of genetic disease travelled from across the UK to the Wellcome Genome Campus near Cambridge to sit as members of the UK Citizens' Jury on Genome Editing. A citizens jury typically involves a period of intense learning from experts, focused deliberations, voting on an ethical question and the writing of policy recommendations – and that is exactly what they did here.
The aim was to provide an insight into the perspectives of a group of patients with inherited genetic conditions on what they think about the benefits, risks and wider harms emerging from the application of embryo genome editing. Their recommendations support policy makers, researchers and wider civil society to better understand informed public perspectives.
The jurors welcomed the opportunity to have their voices heard, so much so that they agreed to be filmed and interviewed throughout the process. This documentary captures what took place over that week in September.
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