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03/01/2015

Fools Rushing In?

Trevor Stammers is our guest blogger for today.  Dr. Stammers is the Programme Director for Bioethics and Medical Law at St. Mary’s University, Twickenham in London.  Prior to St. Mary’s, he practiced as a family physician for 27 years and was a senior tutor in General Practice at St George’s, University of London.  He is also the editor for the multidisciplinary journal The New Bioethics.  Thanks to Trevor for taking the time to provide a British perspective on an issue which is being debated in that country as well as in the United States. — CMC

 

As widely predicted, the House of Lords voted last week overwhelmingly to approve Regulations for 3 and 4 parent IVF to be permitted in the UK; already there is press speculation that the first baby from this technique could be born by October 2016. At least the debate in the Lords lasted around four hours whereas the Commons only took 90 minutes to pass it (compared to 90 hours of debate over banning fox hunting with dogs).   So the race is on for the UK to be the first.  So why am I, as a physician-bioethicist, not cheering enthusiastically with the crowd as the starter’s gun is fired?

Though I hope as much as those championing this cause that it will result in healthy newborns with no subsequent risk to them or their children, the haste with which the UK has rushed this through with so many questions unanswered worries me. The Lords debate did nothing to reassure me.

The lack of transparency over the language use has worried me for a long time, and the Lords debate was rife with it. Those in favour of ‘mitochondrial donation’ will already be criticising me for calling it ‘3 or 4 parent IVF’. “It’s not,” they say “because the amount of DNA from the donor egg is so small as to be negligible.” This argument seems untenable when the very fault in that “negligible” DNA in the intended birth mother’s egg is the very reason for the whole procedure being carried out in the first place. Is someone contributing directly to the DNA of a new blastocyst a genetic parent of the resulting child or not? If they are, then the amount of DNA contributed is irrelevant. Imagine things go wrong and an apparently healthy child is born who subsequently turns out to be say, autistic, would that child not want to know who donated the mDNA and regard that person as a parent in some way, especially if legal compensation was at stake or even if it were not?

The term ‘mitochondrial transfer’ is also very misleading. The mitochondria stay in the donor egg and it’s the nucleus from the patient’s egg that is transferred in a genetic manipulation which mirrors the first stage of SNT cloning procedure, despite the constant assertions that cloning has no relevance to the technique– another worrying denial. “Suggestions that mitochondrial transfer techniques are a form of cloning when they are nothing of the sort … are very unhelpful and not part of any reasoned discussion about the issues” one peer asserted. Methinks the Labour Lord doth protest too much!

Then there is the denial that this form of genetic engineering (for that is what it is to most of the public) will enter the germ line. Clearly it will– at least in females. The Lords’ responses that we should then still allow it for male children and that even in females the mDNA will be diluted down through the generations seem to be rather desperate attempts to deny that germline transmission is actually occurring.

We have been in a similar state of misinformation before in the UK. In 2008, when the very scientists now promoting 3 parent IVF were then promoting animal-human hybrids as the only way to obtain enough embryonic stem cells, which were promised to cure dozens of diseases. The lobbyists got their way then but science took another turn along more promising avenues and such hybrid research has withered away.

The difference with some of the ‘shroud waving’ in that debate and even earlier regarding IVF itself is that this time it is not part of a dispute between science and religion but between different scientists over the many unanswered questions about these techniques.

Why does one technique, MST (maternal spindle transfer) work in Macaque monkeys but the other (PNT, pro-nuclear transfer) does not? Why are scientists divided over the role of mDNA in things such as personality and character in the resulting child? Why are some researchers now beginning to mention that the donor will need to be chosen very carefully and haplotype matching may be needed? If the technique is merely “like changing batteries,” why won’t any healthy donor egg do?

Finally, though Lord Winston stated in the Lords that he has had no difficulty recruiting egg donors, these techniques are generally accepted to require dozens, maybe hundreds, of donor eggs before a normal live birth will be achieved. Where will all these donors come from, given that that egg donation is not a risk-free procedure for the donor? The debate about payment for and commercialization of women’s eggs can only intensify if these techniques are used in human trials.

British medical hubris is in overdrive to lead the ‘3 parent IVF’ charge against mitochondrial disease and is inevitably already prompting other countries such as the US to follow. One of my friends commented to me after the debate, “This could be a genetic thalidomide.” I hope he is wrong, but other nations might be wise to wait and see; that enthusiastic cheering might yet turn into the inchoate cries of Babel instead.

Trevor Stammers

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