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Tom Shakespeare discusses the ethics of gene editing

Advances in gene editing technology mean that it is now primed to be used with humans and very important ethical issues must be considered.
Hi this is Fraser MacMillan one of the lead educators on this FutureLearn course. We’ve seen the genetic engineering and synthetic biology techniques have led to recent rapid developments in the ability to edit DNA sequences in the genomes of many organisms. Such work also requires that many ethical issues need to be addressed especially when the technique could be applied to humans. Today I’m with Professor Tom Shakespeare an expert in bioethics from the Norwich Medical School based at the University of East Anglia. Tom, from your viewpoint in relation to the potential to apply gene editing technology to humans what are the the basic points to keep in mind.
Okay, so obviously these advances in gene editing technology mean it’s ready to be used with humans and so we’ve got to look at ethical issues before applying those approaches widely, and when thinking about how these techniques might be used it’s really important to highlight the changes that might result in germ-line DNA or contrasting in the DNA of somatic tissues germ-line DNA changes of course a hereditary effect the genome of all the cells in a person and in their offspring and in their offspring going forward, whereas mutations or changes to the DNA of somatic cells are limited to those specific tissues and won’t be passed on.
Okay, so do you have any specific concerns with the potential to edit the germ-line DNA sequences? Yes I do and many people do and the reasons are it’s basically safety in long term consequences gene editing is a powerful technique but it’s not necessarily fully accurate or or proven and so if something goes wrong and it’s passed on to children to their children it’s a really important issue for everyone to to consider is this the right way to stop future individuals having impairments and illnesses? Are these the genetic risks outweighing the possible genetic benefits? Mm-hm and what about the potential to apply gene editing to the DNA of somatic cells?
Well, I mean I would first say they’re probably easy ways to avoid illness an impairment which I’d use first but I don’t think it’s wrong in itself I could see that you could use genome editing to create better animal models and cellular tissues models for disease which obviously helps scientific medical research you might for example also overcome the problems of xenotransplantation allowing us to use tissues and organs from other animals to be translated into humans.
And of course it might allow treatment of embryos prior to implantation it might have with T cell therapies to counter serious disease such as leukemia or HIV it might help with gene therapy treatments for muscular dystrophy or cystic fibrosis, none of these are germ-line interventions there are studies in all these areas and to be honest I don’t see what’s wrong with them I think they’re part of general medical research. Tom, so you’re an important campaigner for the rights of people with disabilities do you think that gene editing techniques could be significant in relation to these types of issues?
Well, I think disability is a complex issue it’s got lots of different dimensions disability rights campaigners have talked about people being disabled by society not their bodies and if you take that perspective you would say let’s not try and fix individuals let’s look at other approaches to overcome their difficulties such as addressing environmental barriers or improving medicine or education or whatever.
For me I think we can do all of these things we can obviously try and create accessible housing better services, better healthcare if that helps but we can also try to help people lead longer lives with less physical restriction and suffering and I know there are differences opinion on this but I think we should do all of the different things including basic medical research and somatic gene editing. As someone who conducts research in bioethics does it cause problems that people will have different points of view in relation to the advantages and disadvantages of gene editing in humans?
I don’t think so I think we must listen to disabled people as we should with parents and medics and all the rest of it people will have different responses. They do now with prenatal diagnosis and selective abortion to avoid having a baby with disability. But where gene editing techniques are proven and safe treatments for conditions for example like cystic fibrosis and muscular dystrophy I can’t see why a parent or the individual themselves shouldn’t be allowed to opt for them.
I don’t think people have bad lives I don’t think they’re inferior I think everybody is equal I don’t think certain people shouldn’t be born so I don’t think we have a moral duty to use technologies but I don’t see a compelling moral reason not to use these technologies. Okay, so it seems that what you’re suggesting is that the validity of whether or not to apply gene editing in humans will depend ultimately on the circumstances of the individual is that right?
Yeah, and I think it’s all about informed consent that’s what we do generally in healthcare and of course people will have different opinions and partly because illness and impairment is so diverse, some conditions cause great suffering and pain others cause premature death others because profound cognitive deficits and yeah you could see why you want to avoid these or treat them but other forms of illness and impairment course trivial differences which really don’t have a significant effect on life and partly for this reason about this variability of illness and impairment people with conditions have a range of views and some particularly those with degenerative conditions like muscular dystrophy or cystic fibrosis which may kill them are very supportive of gene editing, others are opposed they say look we’re fine away we are.
Great, so do you have any final points that you’d like to make in relation to this very brief review of this topic? So, to wind up this is my position in relation to the use of gene editing a firm no to germ-line gene editing because of safety fears, a cautious yes to somatic gene editing but always on the basis of informed consent.
Somatic gene editing has lots of unexplored potential which to my mind means there’s no need to investigate germ-line gene editing right now there’s so much that we could try that we just don’t know and that might work and finally a plea to everyone to think deeply about these questions we don’t speak with one voice but our many voices should be heard. Professor Tom Shakespeare thank you very much for taking the time to discuss gene-editing with us today. Thank you. Thank you.

Advances in gene editing technology mean that it is now primed to be used with humans, and very important ethical issues must be considered before these approaches can be used widely.

Here, Fraser MacMillan, one of the lead educators on this FutureLearn course, discusses this topic with Prof Tom Shakespeare, an expert in bioethics. Previously of the Norwich Medical School, University of East Anglia, Prof Shakespeare now works at the London School of Hygiene and Tropical Medicine.

Their discussion focuses on several important points, which were discussed in a recent report from the Nuffield Council on Bioethics. Part of the conclusions from this report state:

‘Of all the potential applications of genome editing that have been discussed, the one that has consistently generated most controversy is the genetic alteration of human embryos in vitro. Research undoubtedly has a very long way to go before any application of this sort could be contemplated and, in the UK at least, the transfer of an edited embryo to a woman is currently prohibited by law. Nevertheless, such applications are theoretically possible and there are strong moral arguments for them, at least for limited purposes, as well as against. The principal challenges are the very difficult questions of what would be required to demonstrate safety and efficacy, and of resolving the ethical arguments for and against attempting it. It is therefore appropriate to consider carefully how to respond to this possibility before it becomes a practical choice. Addressing these difficult questions now will help to meet concerns that technology is rushing ahead of public debate and allow such debate to influence the development of the technology, distinguish acceptable from unacceptable aims, and reduce the uncertainty and ambiguity for researchers and potential recipients of the technology.’

In considering how these gene editing techniques might be used with humans it is appropriate to highlight that they can lead to changes in germline DNA or in the DNA of somatic tissues. Germline DNA changes will be hereditary and affect the genome of all cells in the person and in their offspring. By contrast, mutations to the DNA of somatic cells will usually be limited to specific tissues and they will not be passed on to future generations.

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