Our Scientific Projects Officer, Abby attended the In Our Lifetime screening!

Oct 4, 2023

This week’s blog has been written by our Scientific Project’s Officer, Abby.

Abby recently attended a film screening of In Our Lifetime, a documentary made about the world’s first citizens jury on embryonic human genome editing.

Read to find out what they thought about the event.

Picture of Abby
Genome editing can be an alarming concept, riddled with connotations of designer babies, eugenics, and dystopian fictions like Brave New World. That’s why the organisers took time to define the question:

‘Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?’

Even this question can quickly become sensationalists – is this the start of the slippery slope to eradicating all genetic ‘abnormalities’? For me, the short answer is ‘no’. Because of the way policy is made (slowly), it feels safe to have a conversation about specific genetic conditions that are life limiting.

The citizen’s jury was made of 21 individuals who either lived with or had family with a serious genetic condition. Last year, they spent four days together hearing from experts in across fields including gene editing, policy, ethics, and disability rights before debating and deliberating on the question.

At the event, we were shown the 20-minute film, and then a discussion session was held where we, the audience, became part of the jury.

Currently, embryos can be screened for some genetic conditions. Prospective parents then have the choice of which embryos, if any, to implant. This way you can avoid pregnancies where the foetus is likely to develop disease. Technology is fast approaching that would allow genes in the embryo to be edited to remove those conditions.

Going in, I expected people to see some strong anti-editing opinions. Many of the discussions around gene editing I’ve seen before were linked to conditions like autism and d/Deafness which aren’t considered disabilities by many parts of the community and the idea of selectively removing those parts of a person would be abhorrent.

I thought serious genetic disease communities might feel similarly, and some did, but others disagreed. One juror noted that someone’s identity is made after birth, not before.

Another mentioned her son, who had passed away as a baby, and felt that gene editing for conditions which are highly likely to cause death before 5 years was an easy question – it should be an option.

Another simply said, ‘I am suffering, and I don’t want my children to suffer’. Others pointed out that by changing the law, you are giving people a choice, nothing more. And so long as that choice come with accurate, accessible, unbiased information, I find that a hard point to argue with.

It would be easy to put off this debate – you could say it’s a long way off being relevant, that the NHS should focus on other issues, that it’s up to people with rare diseases – but they all feel like cop-outs.

This technology is not far off, you might have a genetic disease you don’t know about yet, or you might be a carrier. Like it or not, this is going to be a political issue at some point and engaging with debates like this is part of living in a democratic society.

People living with serious genetic disease should absolutely be at the forefront of any discussions, and the rest of the population needs to be there to support and uplift those voices.

I came away feeling less frightened of genetic editing, and more equipped to form opinions. I also gained an appreciation for how tough living with a genetic disease can be and that you really need to have lived it to understand it.

I think I over romanticise disability in some ways. I believe strongly that disability is a societal, not individual issue, and that diversity bring richness to our society. If we irradicated all disabilities that world would be a much greyer place. But that is not what is at stake here.

Perhaps a parent should have the option not to bring a child into the world who is likely to be in pain for most of their short life. Every disease has a different impact on a person’s life and identify, and so legislation needs to be considered individually for each disease.

What is very clear to me is that we need to have this discussion now, before the technology moves too far, and that patient groups need to be at the heart of the discussion.

We hope you enjoyed reading Abby’s blog about the film screening of In Our Lifetime!

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