In September 2022, 21 people from across the UK spent a week together in Hinxton Hall just outside Cambridge. None of them had met before. Their backgrounds, opinions, and stories were wildly different. But they all had lived experience of serious inherited health conditions – as patients, as carriers, or as carers. Together they became the UK’s first Citizens' Jury on Human Embryo Editing, tasked with deciding whether the UK government should consider changing the law to allow certain serious genetic conditions to be ‘edited out’ of a family tree forever.

As they left us at the end of that week, their message was clear - they wanted broad public discussions to start now and they felt their deliberations, and their voices, “must make a difference” in the wider world. While the majority expressed support for the clinical application of the technology, there were limitations and conditions attached to this. A minority also felt extremely concerned about the structural inequalities for disabled people that currently exist and thus could not contemplate supporting embryo editing at the present time.

After the report was published and shared with policy makers, we asked - how can the lived experience of people with inherited conditions be amplified further? This event is the start of that process. It brings together members of the rare disease communities; ethics, science, health, and policy professionals; members of the press and the creative industries.

Following the big screen premiere of the 20-minute documentary film of the Jury itself, our audience will be invited to join us in a collaborative brainstorming event, sharing their ideas on how best to extend the impact of the jurors’ recommendations and expertise. Our conversation will be live drawn on screen giving us a ‘Make a Difference’ road map for the months ahead.

Then it’s off to the Picturehouse bar for drinks and chat, giving us all the chance to make the connections and introductions that matter.

Human Genome Editing is already a scientific reality. What we do with it is still very much up to us.

The Citizens' Jury on Human Embryo Editing was commissioned by Wellcome Connecting Science and delivered in partnership with Genetic Alliance UK, Involve UK and the Kavli Centre for Ethics, Science, and the Public at the University of Cambridge.

In Our Lifetime - Film Premiere and Call to Action