Ethics and gene editing

It’s time to return to the British Science Festival in Brighton and a fascinating guest lecture organised by the Biochemical Society. Jackie Leach Scully, Professor of Social Ethics and Bioethics at Newcastle University took us through a detailed and careful look at the ethics of gene editing in humans - a hot and exciting topic in the research world, but one that’s fraught with ethical and social implications. Kat Arney started by asking her to clarify what we mean when we talk about human gene editing or genetic engineering.

Jackie - Well conventionally, we take it as there being two major areas. One is about the use of something like gene editing to eradicate or at least reduce the impact of diseases and disabilities. And the other is about augmenting or enhancing human capacities through genetics means. People have said it’s something like making people better or making better people.

Kat - What are the sort of areas that you home in on to think about?

Jackie - One of the areas is about which kind of interventions are going to be looming over the horizon and which need addressing now, versus the ones which are much more speculative, a bit more science ‘fictiony’ that we may have been thinking about for a while. Sometimes issues around regulation and legislation and so on are much, much more boring than imagining Frankenstein’s monsters and mutant societies, and so on. But both of those actually I think need to be looked at.

I don’t think it’s right to trivialise some of the science fiction aspects because – and some people can get very dismissive of them - they're never going to happen and they're never going to happen like that – but it’s important to try and follow those intuitions, trying to imagine what would it be like if gene editing became a routine part of healthcare or cosmetic practices or something like that.

Kat - Because I think even 5 years ago, before CRISPR became really big, if you had told me that scientists in China were going to be editing human embryos, I would’ve just said, “Pfft! Get away, that’s…” But this year, we’ve seen that that’s what they're doing.

Jackie - Yeah, that’s right. So it’s unwise to say these things won't happen and we can't often anticipate what some kind of really transformative intervention might come along.

Kat - So, in your lecture you highlighted three areas really about efficacy – does this stuff actually work and I guess there are ethical questions around doing the research to see if this stuff works. And then safety – is it safe to do this to people? - and then the sort of the broader ones about society. What does this really mean? Let’s start with the first one about does this stuff work? How do we get to it working?

Jackie - Obviously, it’s an ethical issue because if somebody comes along and effectively selling a product saying this does that, then you want to be sure that it actually does do that, and that you're not selling to the public something that doesn’t do it or doesn’t do it as well as it’s claimed.

I think we’re more sophisticated nowadays, more alert to the idea of there being, of hyping of technologies. We’ve seen it happen in the past. We’re a bit more savvy about it. But of course particularly, when you're talking about human disease and disability, there's a great yearning among many peoples – particularly those are experiencing it directly - to be able to improve things. There's a lot of hope around some of these technologies.

I know that some of the pioneers in gene editing as soon as the first announcements came out, were inundated by requests from the general public about when treatments were going to become available. And that’s really difficult because we know that treatments become available possibly 10 years, 15 years down the line. They may not be quite as good as we hoped at the onset. They would always need a lot of regulation, a lot of care around it to make sure that they are safe and so on. So you don’t want to raise people’s expectations about what this thing can do.

But in the real world of course, science and research are also trying to get public attention, and public support for your research and funding too. So, you have to exert a certain amount of self-discipline not to overstate your case.

Kat - And that leads us on to the ideas of the safety and the kind of the steps that you have to go through to make something safe and effective. So for example, with gene editing, if you think about doing it in human embryos, you need human embryos to experiment on.

Jackie - Yes, you do. At the moment, we can do that at least up to a certain time of embryo development although there's debate at the moment about extending that time limit, which is a legally set limit. I think most people would be okay with the idea that we need to do the research on embryos before we go anywhere near making a real human out of that embryo. There are certain people and certain religious groups that have a lot of concerns about working on human embryos at all and the ethics of that. So, it’s not something to be taken for granted that we can do this.

Kat - And then more broadly in society, thinking about what sort of people - if we are making people better or making better people, what does that mean for our society? You’ve talked about using gene editing for curing disease and disability. But that’s almost like equating that disability is somehow a disease. What happens if we try and get rid of these things from our society?

Jackie - At the outset, I think it looks like an unequivocal good. It’s probably going to be more nuanced than that, certainly with cases of disability. There are some very active voices in the disability movement that it’s saying things like, “Not all disability is a tragedy. Some of it is perfectly compatible with a flourishing life.”

Even some diseases are and there are ways in which we might want to think about – as I think I mentioned in the lecture - there are some genetic diseases that are sufficiently common that you begin to wonder putting it teleologically why they're there. Is there perhaps an associated benefit that we’re not aware of that may meant that they have been perpetuated through evolution?

But even leaving that aside, it’s I think a real over-simplification but attempting one in public debate at least to sort of lump all disease and disability together as being all equally unwanted and equally terrible and life-affecting, and equally something that we want to get rid of.

Kat - And in terms of the diversity of our society, is it a good thing if we’re working towards the sort of homogenous perfect human, whatever that is or if that’s possible?

Jackie - It’s probably not possible and I think it’s probable that there’ll be – if gene editing pans out and if it becomes possible to do it for enhancing or similar augmenting aims then it’s just likely that we’ll start introducing genetic diversity as is that will start reducing it.

There are some very subtle questions that need to be explored about what it means to us as a society, to start thinking about ‘perfectibility’ and what we mean by perfect. If we think about that idea about perfect beauty, about the perfect kind of person, the desirable kind of person, that’s changed such a lot over history – even recorded history.

And it’s so culturally variable as well that it would be, I think, quite unwise to decide, “Okay, this is the kind of person that we really want to have and let’s make sure that we set that into the genome so that we can ensure that everybody pops out looking like that” because 10, 20 years down the line, the fashion might be for somebody who looks quite different.

Kat - And finally, as a writer, I'm fascinated with the idea that we can use science fiction whether that’s books or films or radio plays or even podcasts like this to explore these issues in a fictional way and get people thinking about it. Do you think that we should have more of that to engage people with these ideas for how do we want society to be?

Jackie - I’d hope so because for those who aren’t scientists and aren’t utterly obsessed with science and the detail of the science, it can be very dry. It can be not very engaging. You can miss the broad sweep within all the little details. I'm an avid science fiction reader myself and I would’ve been and I like to say that a good deal of my moral framework research by reading a sort of young adult science fiction many, many years ago. Particularly the work of Andre Norton if anybody knows her.

I think these sorts of things can be enormously influential and I’d like to see a wider range, not necessarily the more doom laden aspect of catastrophes and disaster scenarios of using something like gene editing. But also, exploring the sort of fairly sophisticated and at a nuanced what might it be like within a society that routinely used something like gene editing and go beyond the standard things of oh, people would transform themselves but explore perhaps what might happen within a family, what might happen within schools and so on - everyday mundane things.

Kat - I love the idea of, if you have it in your Tinder profile, would you swipe left or right depending on how modified you were?

Jackie - Something like that, yeah!

Kat - Jackie Leach Scully from the University of Newcastle.