Should embryo editing be legal?
A gene editing revolution is underway. Technologies like CRISPR Cas 9 give scientists the power to alter biology by removing, adding, or changing sections of DNA. The potential power of these tools is most apparent in medicine, where scientists have the ability to edit out the gene responsible for some incurable conditions so that carriers don’t pass them on to their children. Some scientists see the next step as performing gene editing on embryos before they’re implanted into their mothers, but this comes with a host of ethical concerns. Here’s a clip from a short film following the recent sitting of a Citizens' Jury set up to debate these very questions:
Juror - I might not live an incredibly long life and I believe in choice. However, does any severe morbidity in me and the length of my life determine its value or its richness? No.
While many are excited about embryo editing, any decision over its legality must be taken with careful thought: could we be paving the way to so-called ‘designer humans', setting in motion a slippery slide towards eugenics? Or perhaps we might damage ongoing efforts to understand and integrate people with rare genetic conditions into society?
The answers to these questions are not simple, but they can’t be ignored for much longer. In the search for answers, people with experience of living with genetic conditions, and their advocates, feel they aren’t always being listened to, as James Tytko reports…
Louise - Hi, I'm Louise. I am the mum of a child with a rare condition. He's incredibly lucky. His condition is treatable with medication and he's doing really well, but I felt that a lot of our journey to diagnosis and to find out what he had, it did feel like luck. And I think, in this day and age, there should be more choice for people, more understanding of what's happening to them and what they are passing on to their children. That's why I wanted to get involved in the Citizens' Jury.
James - A Citizens' Jury is a deliberative democracy exercise. It brings together people from diverse groups, as well as experts and deliberators, to discuss and debate issues with a view to making policy recommendations.
Sarah - These in-depth processes are brilliant at unlocking complex, knotty, moral issues where there are lots of different value judgments and there is a really wide range of views.
James - Sarah Castell, Chief Executive of Involve who facilitated the Citizens' Jury on embryo editing.
Sarah - They're often ones which give politicians a headache, where politicians say, 'I don't know what my remit to act is here. I don't know what the public genuinely want me to do because all of their views are so different.' There are some things where the way forward isn't clear and where you need to really have a deep reflection and bring out the nuances, and then come together and come up with a clear recommendation.
James - In late 2018, Chinese biophysicist He Jiankui shocked the world when he announced that twins had been born with a genome he had edited. An astonishing development, what he had done was also highly controversial and landed him a three year jail sentence. The procedure was risky and unsanctioned, and while the two children, Lula and Nana, are currently doing well, it's still unknown as to whether unwanted genetic changes might lead to health complications later down the line. One thing is for sure, though, Jiankui's procedure meant we couldn't put off difficult conversations about embryo editing for much longer. That was the feeling anyway of Professor Anna Middleton, a counsellor whose job is to help families make difficult decisions following genetic testing. While she was appalled that a scientist could take matters into his own hands in this way, bypassing the ethical process, she also recognised the power of embryo editing for the people she works with on a daily basis, those whose lives are impacted by genetic health conditions...
Anna - The key ethical issue is that we've made a moral distinction for some reason between treating somebody with an inherited condition through gene therapies and that being a good thing, and treating an embryo as a bad thing. And I would argue that if we are waiting for somebody to become ill before we treat them, why are we doing that when we could treat them earlier? And if we are thinking about treating them earlier in childhood, then why are we not doing it in utero? And if we're thinking about doing it in utero, why are we not thinking about doing it before we get to that point? Why aren't we just at least discussing the editing of human embryos to treat inherited disease for all future generations? Let's have a conversation about it.
James - But having this conversation, Anna feels, must hinge on a crucial component...
Anna - I feel increasingly frustrated that the people that are having conversations are the scientists, the clinicians, and the policy makers, and they are deciding on the behalf of others what good enough looks like. There really hasn't been broad public debate dialogue, and there definitely hasn't been concerted, joined together dialogue in patient communities. In the scientific conferences that I go to, there are just so many repeated calls for public dialogue, but nobody's actually doing it or knows how to do it well. And that's what we need: this joining up of really decent dialogue.
Will - I'm Will. I'm a granddad. I have an eight year old granddaughter with a very rare condition that's degenerative and life limiting. I didn't know what to expect of a Citizens' Jury. I don't think any of us did. But very early on we had a discussion about ground rules, that it was going to be a very safe space and that people would be respectful. And I think it's been patently obvious that the jury has become more than a jury. We are not just a group of individuals who met and went away. We've become, I think Michelle has used the word, a family. We argued probably like people do in families, but we look out for each other like people do in families. We're getting emotional again, but, I think it's that: we are not alone.
James - The jury ultimately voted in favour of asking the UK government to consider changing the law to allow genome editing of human embryos to treat serious genetic conditions. That's far from the end of the discussion though...
Michelle - Hello, I'm Michelle. I feel that the jury itself really wants to bring the recommendations into parliament. I think we could possibly set a precedent. We want to hear it for ourselves. We want ministers to be able to ask us directly, because I doubt that there's many times in their lives where they would've experienced people with lived experiences of rare conditions. So in order for this to take any traction and for it to make a difference, in order to create legislation that is going to be ethically sound, the only way for us to do that is to take the information from the jury and run with it.
Anna - I don't think we are ever going to reach a point where we have global consensus. We could do a million Citizens' Juries, we could do a million surveys, millions of workshops, we could involve every different community that's affected by this and I don't think we're ever going to agree. But what we can get to a point of is having a shared understanding of what the values are that we feel are really important and move from there. It's about bringing a real diversity of debate to the table and the Citizens' Jury is just a part of that. It's a piece of that.