Fluffy Notions of “Human Dignity” Trumped by Refreshing Show of Compassion in Politics

A few weeks ago, MPs voted in favour of ‘three-parent IVF’ – or, for those of us who can do without the sensationalism, Mitochondrial (mtDNA) Replacement Therapy. This was swiftly followed by the inevitable backlash from some other political and religious types (y’know, “it’s unnatural”, “you’re playing God”, and so forth), and in particular a sternly worded protest letter from several dozen MEPs. According to them, ‘three-parent IVF’ is unethical, illegal, and moreover has dealt human dignity a swift kick to the nether regions (never a good thing when you’re trying to conceive).

I’ll just pause very briefly to consider what the hell they meant when they said that the proposals “violate the fundamental standards of human dignity”… Nope, no idea. Probably just sounded good at the time. Moving on.

There is an ethical dilemma here, but it isn’t the one that these MEPs are yelling about. This isn’t a move toward creating ‘designer babies’, it’s a move toward giving couples the chance to have a child who won’t suffer serious illness and possibly an early death. The ethical dilemma here surely centres on whether or not it is right to withhold such life-improving treatment when it exists. The question we should be asking is: should we prolong the suffering of would-be parents and risk the suffering of as yet unborn children when we have the means to do something about it?

The MEPs claim that the UK is transgressing EU law by approving these treatments. On first reading this seems conclusive. Article 9 of the EU’s clinical trials directive clearly states that “No gene therapy trials may be carried out which result in modifications to the subject’s germ line genetic identity.” So, regardless of the fact that mitochondrial replacement would take place prior to fertilisation, the therapy would result in changes that would be passed down to future generations, and thus directly contravenes this directive.

However, for the purposes of this particular directive, “the subject” is defined as “an individual who participates in a clinical trial as either a recipient of the investigational medicinal product or a control”. In order for the therapy to contravene the directive, therefore, would it not have to alter the mother’s genetic identity, as she is the recipient? The potential baby’s genetic identity is irrelevant at this stage, as it is not the subject of the therapy (more the ‘object’). It could hardly be said to be participating in a trial, as it isn’t even present at the start of it. Maybe I’ve misunderstood. Any geneticists out there who feel like taking the time to explain it, please do so in the comments.

One way to avoid the problem of such heritable modifications would be to only allow for the creation of male children using mtDNA replacement therapy, as only females are equipped to pass on mitochondrial DNA (it’s in the egg, not the sperm). Gender selection is an idea that won’t sit comfortably with some (I feel a bit weird typing it myself, though I appreciate the reasoning behind it), but it’s one that was raised by the US FDA last year during its own discussions of mitochondrial manipulation technologies (I haven’t been able to find out what the outcome was; please post in the comments if you know). However, as sex selection is already legal in the UK for medical reasons, perhaps the thought shouldn’t be dismissed out of hand.

The proposed procedures do risk falling foul of the EU charter of fundamental rights and freedoms, which prohibits eugenic practices. Although the therapy aims to assist a very small number of people to produce healthy children who might otherwise have been born with defective mitochondria and all the problems that come with that, it could be argued that one outcome would be improvement of the genetic quality of the human population as a whole. I personally don’t see that as a bad thing (how could anyone object to the eradication of genetic diseases?), but I’ll save my diatribe regarding eugenics for another time.

This is all pretty irrelevant now, anyway, given that the House of Lords approved the draft Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 earlier this week, and now it remains only for the Human Fertilisation & Embryology Authority (HFEA: the UK’s fertility sector regulator) to develop licensing rules and gather the last bits of information on the safety of the procedures.

It did puzzle me that the majority was disinclined to delay the decision until final evidence of compliance with EU law and the safety of the proposed procedures was available. However, as The Wellcome Trust explained in its response to the HFEA’s consultation on mitochondria replacement, putting the legal framework in place to allow such procedures means that such treatment can be offered as soon as the supporting evidence for its safety is available. The treatment will, of course, not be licensed unless it is safe.

It therefore seems to have been an ethical decision based at least in part on reducing the waiting-time for eligible patients, which improves the chances of success by being able to start treatment sooner. A small blow dealt to the biological clock, if you will.

Britain is the first country in the world to legislate for this type of therapy, but it certainly isn’t the first to have made use of the techniques. An estimated 30-50 people worldwide are the result of assisted reproduction using mitochondria from a donor. This interesting article about one of them also highlights the similarities between the initial reaction to IVF treatment back in the 1970s, and the current debate regarding mtDNA replacement therapy. Critics of IVF feared it would lead down the classic “slippery slope”, toward so-called designer babies altered for traits as trivial as hair or eye colour. But it didn’t. Given that mitochondria replacement is being proposed only to help couples at high risk of passing on a mitochondrial disease, such fears would seem to have even less foundation.

Regardless of whether or not the approval of this legislation breaches EU law, it seems clear to me that the House of Lords’ decision was an ethical one made in the best interests of potential patients. We can’t say for sure what the long-term effects of these procedures might be, but that’s true in the case of many other treatments that society takes for granted – IVF, for example, which underwent far less scrutiny before being licensed than has mitochondrial donation. The potential positives to come out of such treatment are numerous and, for the most part, well evidenced. At any rate, humanity would never get anywhere if it allowed fear of the unknown to override confidence in the known.

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