Professor Lauds DNA Manipulation: 'Real Opportunity to Prevent Suffering'

Sputnik discussed this with Ellen Wright Clayton, a Professor of Pediatrics, Professor of Law, and Professor of Health Policy at Vanderbilt University.

Sputnik: Professor, what are your thoughts on gene modification?

Ellen Wright Clayton: I think this is a new technology that offers a real opportunity to prevent a lot of suffering. There are a number of diseases that we can think about like sickle cell disease or others that really could be benefited from this.

Sputnik: And in your opinion can gene editing contribute to the welfare of society?

Ellen Wright Clayton: I think to the extent that it decreases human suffering then I think it can be a benefit. I think the challenge is going to be to make sure that the therapy works, that it doesn’t cause side effects and that it doesn’t increase health disparities among populations. So I think that there would be a balance, yes, it offers the possibility of conferring a benefit on society.

Sputnik: Professor, if allowed what consequences can it have on future generations?

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Ellen Wright Clayton: Well if we do germline gene therapy, then obviously it will change not only that particular infant, but all the children that that infant has gone into the future, and so given that particular possibility, this is going to have to be done with very great care to make sure that there aren’t any adverse side effects, and also there is a strong commitment to making sure that we use this technology only to treat very, very serious diseases that are not otherwise able to be treated and not to be used for human enhancement.

I know people talk a lot about designer babies, but designer babies would be extremely complicated to do and are not what this technique ought to be used for.

Sputnik: Professor I was about to ask you about the designer babies, how serious is this matter? And how can it be addressed or prevented?

Ellen Wright Clayton: Realistically it’s not in the immediate future, so in the longer-term issue we need to think about this and really has to do with our ability as a society to regulate how technologies are used. I think one of the things that the UK has with their system, the HFEA (the UK Human Fertilisation and Embryology Authority), is they have much more control over reproductive technologies then we do, for example, in the United States.

So I think that since they are in a more heavily regulated state, and since they are also really committed to encouraging a larger public conversation, which has actually given them that kind of authority, I think that they will have, at least in the near-term, a better opportunity to make sure that this technology is used responsibly. So I think that the conditions for using this technology for germline modification require very serious regulation and very serious social conversation.

Sputnik: Professor, some experts have pointed out that if approved, this method could leave those with diseases with less medical support, do you think this is likely?

Ellen Wright Clayton: In general, no. We do have an example where that has sort of been the case; it turns out that for many, many years prenatal diagnosis and genetic screening for Tay–Sachs disease has been going on, and so the number of children born with that disorder have decreased over the years and some would argue that it has led to less research in those disorders.

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But the general pattern, at least in this country and in many countries around the world, is that the amount of research that’s going into treating children with genetic disorders has actually expanded dramatically and the possibilities of therapy have expanded dramatically, so I think the idea that, and to give you a counter-example of that is down syndrome: although that is a common reason for prenatal diagnosis, the fact of the matter is, the life expectancy and the medical treatment of children with Down Syndrome and their social opportunities have expanded dramatically in the last 50 years.

But history suggests that it is not editable, as we think about gene therapy or genetic modification, that we’re going to stop caring about the kids who have these disorders, I think history is dramatical to the contrary.

Sputnik: Professor, as you earlier mentioned gene modification could have the potential to modify genes responsible for deadly diseases; on the other hand, the method itself is yet to be proven safe and could hide a series of faults that could cause a very negative impact on children. In your view how should this controversial issue be resolved?

Ellen Wright Clayton: A lot of research, but not on human beings. The recent report that just came out showing unexpected modifications as oppose to CRISPR/cas9 is a cautionary note, and the international committee that talked about ethical issues and gene editing were very conscious of that, so until we feel very confident that those side effects can be avoided, there is no justification for going forward with this. W acknowledge this in this report, and I think this recent report says that we were correct in that.

Views and opinions expressed in this article are those of the speaker and do not necessarily reflect those of Sputnik.