Three person IVF

It was announced yesterday that the government is moving towards allowing so-called three person IVF for the creation of embryos free of mitochondrial disease.

The mitochondria are tiny organelles in the body of the cell, concerned with important energy functions, and which contain a small amount of DNA. They are present in the egg, but not in the sperm, and are passed down the female line, more or less unchanged, from mothers to all her offspring, and then from daughters to grandchildren and so on. In some cases, women can suffer from various mitochondrial disorders, which they are at risk of then passing on to their children. These disorders may be relatively mild, but in perhaps 5 – 10 cases a year in the UK, babies will be born with very serious disease.

There are a couple of ways of doing the new procedures, but basically the new proposed techniques take the egg of an affected woman and remove the nuclear DNA (the vast majority of our DNA which goes to shape our basic features). A donated egg is also taken, its nuclear DNA removed, leaving behind the healthy mitochondrial DNA. The nuclear DNA of the affected woman is then transplanted into the body of the healthy egg, resulting in an egg which has the DNA of the affected woman, minus the tiny fraction of mitochondrial DNA concerned with cell energy functions.

The Department of Health has backed this procedure after the HFEA conducted public consultations earlier this year; the HFEA reported broad public support for the techniques.  The Chief Medical Officer is now urging the drafting of regulations to allow the procedure to be approved by Parliament as soon as possible. There are hopes that the first patients could be treated as soon as 2014.

Mitochondrial disease can be really severe and lead to great suffering and early death. So why would there be any doubts about the use of such techniques?

My comments here will be confined to the issue of how we debate and balance harms and benefits, and in particular, I wish to look closely at how the debate is represented in the media, because this is surely crucial to any claim that the public broadly support the techniques, and this is a claim that’s been openly used to endorse them. Unfortunately, this debate, like so many others in announcements of developing science and technology related to health in general and genetics in particular, is marred by two familiar features. Firstly it is marred by hype, often created by looseness of language which makes it appear that the techniques are offering more of an advance than is really the case. And secondly it is marred by urgency, the rush quickly to get this up and running as soon as we can. This is particularly common in announcements of genetic advances (somewhat ironic, given the actual slowness of the promised results of the genetic revolution).

Where is the hype? Firstly, a lot of the reporting makes it sound as if this technique is going to offer the chance for parents to avoid passing on the disease – as if this is the breakthrough. Given how bad mitochondrial disease can be, this sounds a very significant advance indeed – of course we don’t want children to be born to suffer horribly. This is however simply inaccurate – parents can already prevent the disease from being passed on, most obviously by not having children. What the technique does it to allow affected women to have children, but without passing on the disease. This might sound picky, but if we are going to balance harms and benefits, we need to know exactly what they are.

Secondly, Sally Davies, the Chief Medical Officer herself, is quoted in several papers as saying ‘it will help mothers to have their own babies’.  But what does ‘their own baby’ mean? The notion that a baby is ‘my own baby’ is not a scientific notion – it’s one that we know full well is used quite loosely. Adoptive parents think of themselves as now having ‘their own baby’. Of perhaps more direct relevance to the current case, given that the technique requires using a donor egg anyway, women who conceive using donor eggs might have preferred if possible to use their own eggs, but still think of the baby that they have carried and given birth to as ‘their own baby’. Mothers who use surrogates likewise think of the resulting baby as ‘their own baby’. Indeed to turn around and say that only babies conceived using your own nuclear DNA could be a woman’s ‘own baby’ seems to be casting doubt on various commonly used techniques of reproductive technology.

(My teenage daughter comically put this point in an analogy to updates of technology –‘oh, you’ve only got Baby 4.0, I’ve got Baby 5.0, it’s better than yours’)

So it would have been helpful had Sally Davies been reported as more accurately specifying that these techniques allow an affected woman to have a baby conceived with her nuclear DNA.

It’s also helpful to avoid using vague phrases like ‘their own babies’ because in any assessment of harms and benefits, we need to weigh these up against any realistic alternatives. Adoption is a possibility, but let’s put that to one side for now – some people prefer not to adopt, and it’s well known that it’s really hard to find a baby to adopt.

The alternative that seems most appropriate to consider is using a donor egg; again, there are practical and ethical questions around obtaining of donor eggs. But we can think about their use here, especially given that the techniques require the use of a donor egg anyway.  (And on this point, it’s interesting that The Times reported yesterday an affected woman as saying ‘I was told that my options would be adoption or having a baby naturally with a risk of having disease’. This again helps to overstate the advance the new techniques might offer, given that no mention of donor egg use was made.) So, what we need to compare and contrast is not some vague ‘having your own baby’ versus ‘not having your own baby’, but having a baby born from your nuclear DNA and the mitochondrial DNA of a donor egg, or having a baby born from a donor egg. I’ll return to this comparison later.

A third element of hype is harder to pin down, because it’s a subtle conflation that comes through in much of the reporting. It’s one that connects the hype very closely to the claim of urgency. It’s this – much of the reporting makes it sound as if the techniques are going to prevent children from suffering and from dying early – it makes it sound as if there are actual children who are now suffering, and therefore, we need to act as urgently as possible to do something about this. Sally Davies again was quoted as saying ‘It’s only right that we introduce this life-saving treatment as soon as we can’.

But the techniques offer nothing in the way of treatment or cure for those who are already born, or conceived, with the diseases. They are about creating new children. They are not about saving lives. They are about creating lives.

This is important because it ups the ante of speed. If someone is suffering, now, we need to act, and to act fast, if we possibly can, right? But that’s not the situation with these techniques. Of course, there are, currently, affected women who wish to have babies, and none of them is getting any younger. But that’s not what is offered as being so urgent – it’s preventing their children from being affected. There’s a subtle confusion present in the media reports about what is really going on, and why it’s really so urgent.

If someone is suffering terribly and we have no clear idea how to save them, we might be justified in using an experimental technique where there were possible unknown harms. But if there is less urgency, it seems only sensible to make sure that the research is done as thoroughly as possible. This is where the talk of introducing treatment as soon as possible starts to sound very concerning.

The scientific team at Newcastle involved in this pioneering work themselves say that they need about another year to work on it. Yet the Department of Health, in its rush to get through regulation, is talking about treating the first patients in 2014. It’s going to be really important to make sure that the research into safety has really been done thoroughly. The hype about urgency really does not help to make considered ethical decisions. If couples wish to use such techniques to avoid passing on disease, the last thing they want is to find that unknown issues have arisen. Where research is in its early stages, a rational choice for some couples might well be just to go ahead and use the donor egg, given that there is much more research and knowledge accumulated to date about the safety of such a technique.

This is especially important given that these techniques will affect what is passed on to subsequent generations. When IVF and other reproductive technologies first came into use, it was generally agreed that they should never be used to alter the germline, to alter what is then passed on to the next generation, in case problems are inadvertently introduced into the wider population. Now, the notion of why we should not interfere in the germline is being subtly changed. Sally Davies is quoted as saying ‘It’s the germline of your mitochondrial DNA that goes down [the generations] but this is quite separate from the DNA of the nucleus which is what makes us who we are.’ But a significant ethical problem with interfering in the germline was not about interfering with ‘who we are’, but with inadvertently producing possible harms in future generations. This has not been addressed by Davies’ statement.

Those working on these techniques rightly say that continued research will need to be done on any baby born as he or she develops. But one thing we know about biology, it’s extremely complicated, and there can be subtle effects that can surprise us. It would also be necessary to continue the research onto the next generation, and possibly generations after that as well.