We’ve come a long way baby

A few days ago, Laura Keynes asked on Conservative Woman, “who wants to be the monster who denies the woman a chance of a healthy baby” while describing many of the problems with mitochondrial transfer – the technique which has just been approved by the House of Commons which paves the way forward for 3 parent babies.

That role fell to me on ITV News, and since then I’ve been replaying the conversation in my head and thinking about what I would say, if I had the opportunity again. Probably, not much different aside from pointing out that the procedure would not have any impact on any of the babies who have so tragically succumbed to this disorder; it would not have saved their lives or spared them the ordeal, rather it would have meant that they would never have been born at all and replaced by other, supposedly healthy children.

But hindsight is a wonderful thing and when you are there, faced by a woman who has lost a child to this cruel disease and who is desperate for a way of conceiving her own healthy child, who is genetically related to her, it’s incredibly difficult to sound notes of caution or disapproval while at the same time exercising compassion for her situation, and of course before I had even opened my mouth, I, along with anyone who might disagree, had already been accused of the ultimate twenty-first century taboo, namely ‘judgementalism’.

In fact the whole introductory package and agenda was similar to that on Radio 4’s Today programme, instead of examining the facts of the matter, the debate was emotionally loaded with footage of a baby destined to die together photographs of Claire’s (the other speaker) baby taken a week before he passed away. What staggered me was the level of scientific ignorance on display, not only from ITV’s own health correspondent but also from GP-turned-MP Sarah Wollaston and everyone’s favourite cuddly Groucho Marx lookalike, IVF pioneer, Sir Robert Winston. Mitochondrial DNA, they argued, only consists of 37 genes out of 22,000, it doesn’t affect inherited characteristics which are contained within nuclear DNA, and stealing an argument straight out of the LGBT lobbyists’ playbook – it takes more than a tiny bit of DNA to be a parent. Particularly fatuous was Robert Winston’s assertion that mitochondrial transfer was equivalent to topping up the red blood cells in an anaemia sufferer or a blood transfusion. Neither of those things have a potential affect on the germ line and future generations.

No concession was given to the undisputed fact that epistasis, the study of how different pairs of genes may interact with each other, is in its infancy. Research (argued here by Ted Morrow, Senior Research Fellow at the University of Sussex) is beginning to demonstrate that mitochondrial DNA may well affect inherited characteristics, such as personality, intelligence and so on – every individual has unique DNA and therefore the effects of mixing up two different sets of DNA, one in the mitochondria and one in the nucleus of an ovum or embryo is far from clear. It’s certainly of concern to various scientists who would otherwise have no objection to IVF or embryonic cell research, both ethically and scientifically. ( Dr Paul Knoepfler is no friend to the pro-life community but at least he hasn’t succumbed to the omerta of most of his peers).

And of course, that’s why I was selected to go on the news and cast in the frame of religious antediluvian bigot, who must stonily tell a woman that it is God’s plan that her baby should suffer and die, because it says in the Bible that we can’t eat shellfish! What would I know compared to Sir Robert Winston and various ‘big-name Nobel prize winning scientists’? Striking a note of caution, not least in terms of mentioning that every single other country in the world has banned 3 parent-embryos both on scientific and ethical grounds is clearly a handy peg on which to hang my bigotry. Mentioning that the FDA, who dwarves the HFEA in terms of size and scope has refused to licence the procedure on the grounds that not enough is known, a lot more testing is needed, that experiments on animals have yielded some concerning results, that China, not known for its human rights record, banned the technique following a disastrous experiment in 2003 (triplets were produced, one was aborted, the other two stillborn), all that, well who cares, it’s just convenient fuel for my prejudices.

The irony is that in a post-Christian world, where enlightenment values have replaced religion, it is clear that devotees of Science, who has replaced God, are every bit as inflexible and intransigent in their views. So faced by the prospect that babies produced by mitochondrial transfer may actually be more prone to cancer, developmental delays and learning difficulties, that one problem may be prevented only to be replaced with a different set of problems, what was the response? Well you’ve got to take a chance haven’t you? Science holds the answer to everything and if it doesn’t work, we need more of it.

And of course, it’s impossible to point out to a grieving mother the selfishness of potentially altering the human germ line, of introducing multiple ancestors, to potentially prevent just a handful of sufferers from being born. One of the things that I was dying to ask, and couldn’t, was whether or not these mothers ever regretted having their children and wished that they had never been born. When we were both in make-up, Claire was discussing how something positive had come out of her experience, that now she works for a mitochondrial awareness charity and how she goes into schools to talk about the condition and the fund-raising she does. Shortly after the news appearance she was off to Parliament to listen to the debate before coming back for a slot on the evening show. Clearly her life was fulfilling, had meaning and purpose despite and one could perhaps argue, thanks to, the fact that she had endured this heart-breaking experience and survived.

That’s not to argue that it’s a good thing that her son died, she would much rather he was born without the condition, but were that to have happened, it wouldn’t have been him, but a different person. Which is the conundrum that parents of terminally ill children face. They don’t want different children with different personalities or appearances, they just want the same ones – disease free. I have met more than one family who have lost their children in similar tragic circumstances and yet they are more balanced and less outwardly emotional about what has happened to them, than perhaps I am. While dearly wishing that their children were still alive and healthy, the experience of watching of children degenerate and die, while tremendously painful has not been without moments of joy and happiness and  even hope. Perhaps you only truly appreciate what you have, until it is threatened and there is nothing like the illness of a child to bring out the goodness inherent in fellow human beings.

I’m not advocating that we ought to celebrate child terminal illness or even accept it, more research needs to be done, but the research needs to help those who are already suffering to overcome their illness and live full lives, not simply prevent their births.

While what I might have said was not necessarily the most compelling as far as arguments go (though I challenge anyone else to be in that situation), one thing I don’t regret is standing up for the rights of the human lives, created only to be destroyed in the process. Slippery slope arguments may be cliche, or considered passe but the reality is that we genuinely don’t know how far this technique may be taken, who is to say that in a generation we won’t see children with 6 or 7 parent ancestors in order to circumnavigate diseases such as cancer.

The process of procreation as being completely divorced from sex has now reached its zenith with the concern that two embryos will be created, only to be chopped and spliced and a third created from their spare parts, being relegated as irrelevant. The idea that these are unique human lives, seen as luddite. IVF has created the principle that human life in its earliest form is dispensible, ours to play about with and manipulate to suit our will; – meaningless compared to the joy brought to individual couples.

It demonstrates how successful incrementalism has been as a strategy for genetic scientists, in that now, the general public no longer cares to think long and hard about the ethics of creating life in a laboratory or the wholesale disregard for human life before it is discernibly a baby. Never mind that we all started out as a unique blastocyst or embryo, so long as we aren’t the ones selected for rejection. No wonder pro-choicers go into spasms of apoplexy every time a common sense measure such as the outlawing of gender-selective abortion or impartial counselling is proposed – they know that anything which could point to the existence of human life threatens to undermine their entire mantra surrounding reproductive choice.

All in all it’s rather depressing but I guess it bears out one of the key principles behind Catholic Voices which is sometimes, it is the witnessing, not the winning that’s important. We can only hope that the House of Lords allots more than a mere 90 minutes than the House of Commons allowed, when they scrutinised this measure. The proceeding debate on telephone and broadband access in rural areas being given 3 hours. Who cares about the genetic future of the human race or whether or not potential sufferers of certain diseases should be allowed to live. Fast access to Facebook is all that matters.

Three parent embryos – an unholy Trinity

A little late in posting this – taken from the Catholic Universe dated Sunday July 7

3parentembryo1

The news that the UK looks set to become the first country to allow the creation of babies using DNA from three people, has caused many of us to instinctively shudder with horror and not simply because of the obvious contravention to Catholic ethics.

The concerns about this new technology go way beyond the creation of human life in a laboratory, which infringes a child’s right to be ‘the fruit of the specific act of conjugal love of his parents’ (CC2378). The mooted technique aims to eliminate mitochondrial disease, an inherited genetic conditions that occurs due to mutations found in the mother’s DNA. Whereas most DNA is located inside the nucleus of a woman’s egg, mitochondria is found in the surrounding material, hence the therapy aims to transplant the healthy nucleus from the egg of a woman with mitochondrial abnormalities into that of a second woman who is unaffected, or alternatively transplant the nucleus of an already fertilised embryo, into another. In both cases, the existing nucleus will have been removed, but in the case of transplanting cells from fertilised embryos, it will entail the destruction of two human lives, in order to create a third.

This wholesale discarding of human life is an issue that is frequently overlooked when discussing IVF treatment. According to statistics released by the Human Fertilisation and Embryology Authority (HFEA) in December 2012, 3.5 million embryos have been created in the UK over the past 21 years of which only 6% have resulted in pregnancies. A staggering 1.7 million embryos have been thrown away – it is no wonder that Lord Alton, a crossbench peer, describes this as the creation and destruction of life as being in ‘industrial numbers’.

The commodification and destruction of life is not the only human issue at stake. A substantial number of human eggs will be required to be harvested for this therapy, a process that is often painful and risky, also occasioning potential future psychological effects. It is likely that it will be vulnerable and desperate women who are cash-strapped, perhaps students struggling under a mountain of debt as well as those already experiencing infertility who will be lured into egg donation in return for a free cycle of IVF treatment.

 And that’s before we get to the core of the issue as to whether or not it is ethically acceptable to be genetically engineering human life and altering the genetic code of future generations? What will be the long-term physical and psychological impact upon those conceived by three parents? Attempts at cloning using nucleus transfer have proven unsuccessful in humans and highly dangerous in animals with a high proportion of spontaneous abortions and offspring born with abnormalities and limited life spans. Any unpredicted genetic problems would then be passed on to future generations. A baby born with three sets of DNA is still a human being of equal dignity and worth and yet will be treated and regarded as an anomaly or human guinea pig requiring lifelong monitoring.

When focusing upon the potential benefits of this technique, the geneticists involved have been very swift to point out the devastating consequences for those affected with mitochondrial disease with a succession of women who have tragically suffered multiple miscarriages or lost babies in infancy, being paraded in the press, who would avail themselves of the procedure were it to be available. It would take a heart of stone not to feel for these women or those individuals who are living with the daily consequences of mitochondrial disease, but genetic engineering is of scant comfort to existing sufferers. It does nothing to cure these illness or alleviate their symptoms. Researching treatments and supporting families of sufferers would be a more appropriate use of funds. The possibility of three parents embryo won’t help new parents who have just received a devastating diagnosis.

Given that it is estimated that around ten couples a year would use the procedure, it raises questions as to whether or not there is some other agenda at work here, as scientific pioneers are dependent upon being able to promote their work to those funding them, the public and decision makers, in order to obtain the regulatory changes and grants to continue and extend their work. The heart-rending cases that we are presented with as a justification are thankfully rare, but even if they were not, we should not allow disability to act as a barrier to being born, especially when it comes with such a high human price tag.

 In common with other life issues, we are being sold a treacherous slippery slope, one that opens up the possibility of genetically modifying pre-born human beings on the grounds that this will affect a tiny proportion of people and as being necessary on the grounds of compassion. How long before other genetic traits are able to be identified and modified before birth? We are not yet in Brave New World territory, but legislation to approve 3 parent embryos takes us another step towards it.