Spinal injury repair, and embryo editing ethics

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.

This weekend an exciting mission that began 7 years ago and aims to return to Earth samples from a nearby asteroid should - if all goes to plan - come to fruition.

NASA are hoping that a capsule containing pristine samples harvested from the asteroid “Bennu” will plop down in the Utah desert. There are a few reasons for visiting this cosmic near neighbour, one being that next century it might well end up on a collision course with us meaning we might need to move it out of the way to avoid a potential impact. To do that, we need to know what it’s made of. But finding that out also opens a door on the earliest history of our solar system, and even the question of where we all came from. David Rothery is a planetary geologist at the Open University and has been following the mission keenly…

David - The mission is called Osiris-Rex. It launched seven years ago in September, 2016. It took two and a bit years to rendezvous with a small asteroid, a bit less than half a kilometre diameter called Bennu. They orbited it, chose somewhere to briefly touch down and grab some sample, and now that's been brought back to Earth. And as the spacecraft flies past the earth, the sample capsule is going be dropped off and will land in the desert somewhere in Utah while the spacecraft sails on to have a future rendezvous with another asteroid.

Chris - Oh wow. Which asteroid and where?

David - It's going to rendezvous with an asteroid called Apophis. It won't bring any sample back, but it will be able to do a good job with its rendezvous, hopefully going into orbit around the asteroid if there's enough fuel. You can learn an awful lot from orbiting these bodies: you can get the density pinned down because you know their size and their mass, and there's an x-ray spectrometer which gives you the elemental abundances. Now this has already been done at Bennu, so we've got a good map of Bennu's composition and we can see how variable it is. If it's the same, that's great. If it's different, we're learning even more. So whatever we learn from Apophis will be great on top of what we've learned from Bennu. But Bennu by then would have samples in the laboratory where we will be able to really take it apart piece by piece and understand the history and whether the building blocks for life are already there.

David - We think that Bennu is made of much the same stuff as the Winchcombe meteorite that people might remember. This landed in Winchcombe in the Cotswolds at the end of February, 2021 when we were all locked down, but it landed on somebody's drive and scientists were there very quickly and it was collected very quickly. It had travelled through the Earth's atmosphere, been on somebody's tarmac drive and some bits were in fields, so slightly contaminated. We're hoping to get at least 60 grams from Bennu. We won't know quite how much the spacecraft has collected until the return capsules are opened up. So it's going to be very exciting when we open these canisters and send them out to the laboratories for analysis.

Chris - Some of the headlines which have documented this mission have said that one of the reasons for going to Bennu is because this poses a threat because it's almost on a collision course with the earth. So we need to know what it's made of so we can work out if we have to blow it up or something. Was that just to get some headlines, is it more that it's interesting studying asteroids and that's the primary purpose of the mission? Or is there genuinely a threat here from this potential impactor?

David - I think Bennu was chosen for multiple reasons. Scientifically, it's very interesting because of its richness in carbon and therefore in organic molecules. Its shape is intriguing, it's spinning so fast, it's in the shape of a spinning top. But also, as you said, it's a potential threat to the Earth. Bennu's orbit crosses the Earth's orbit. One day, it could collide with the earth. Now this size, half a kilometre across, not much of it would survive passage through the Earth's atmosphere. It wouldn't break apart because it's a collection of boulders. It's not a solid lump, so you wouldn't be forming a major dinosaur killing impact on the earth. But we do need to know about the physical composition, mechanical composition of these things because if a bigger one heads our way, we would like to be able to divert it. If it's going to fall apart too easily, you might turn one crater forming impact into several crater forming impacts, which is perhaps the last thing that you want.

Chris - Presumably though, it can tell us useful chemical things because, if this has been out there for billions of years and is a vestige of what our solar system was made from, it must contain the interesting recipes of where we all came from?

David - Yes. And it probably has materials which were delivered to planets like the Earth which enabled life to get going. Now we don't say asteroids carry life, we say they carry the potential building blocks for life. And we'd like to look at these in Bennu in the samples that have come back totally uncontaminated in a sealed container. Those materials will be exactly as they were in space.

Chris - And what's involved in the actual landing and recovery? How are they actually going to do this?

David - The parent spacecraft will fly past Earth on the way to its next destination, but it will drop off a reentry capsule. There's a heat shield on it to slow it down, parachutes will deploy and eventually it'll hit the ground in Utah. But I'm not sure how fast. You wouldn't want to be an astronaut onboard a capsule like that. It'd be a fair old jolt. Hopefully it will not break open at all, it will still be a sealed container when taken to the laboratory.