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Freeing us from our cells: debating mitochondrial disease

5 Oct, 2012

A human ovum ready for in vitro fertilization

‘What’s that you say? They’re filming for BBC2? And it’s being presented by Brian Cox….?’ Before we all started craning for a glimpse of the famous physicist, Sarah Norcross, Director of the Progress Educational Trust, saved us the embarrassment, announcing that ‘While we don’t have Brian Cox [here tonight], we do have Mark Walport’.

Our Director was chairing an evening of debate on the subject of mitochondrial disease – something we’ve heard a lot about recently. To recap: researchers have developed new IVF techniques that use genetic material from a third person to prevent children from inheriting mitochondrial diseases and these are currently the subject of a Human Fertilisation and Embryology Authority public consultation. Should the law be changed to permit the use of these techniques?

Ethical questions of identity have dominated the headlines, as they dominated this debate. But there were some original questions and perspectives offered.

For me, the most thought provoking of the initial presentations was made by Jackie Leach Scully, Professor of Social Ethics and Bioethics at Newcastle University. She brought to light the question of the welfare of the donors who would facilitate proposed techniques. The two techniques, pro-nuclear transfer and maternal spindle transfer, require donor embryos or eggs, respectively, containing healthy mitochondria. Donor embryos would either be created specially for the purpose from donor eggs and donor sperm, or could be donated from a couple undergoing IVF. It seems likely that donors would have a role closer to that of a blood donor than an egg donor, but Scully was quick to point out that the procedure that they undergo will not require a mere “half hour on a trolley with a cup of tea and a custard cream afterwards”. Donors will have to undergo “significant surgical and hormonal intervention” and it is vital that they are protected against exploitation.

Given that mitochondrial DNA has no affect on a child’s inherited characteristics, it seems right to dismiss any suggestion of a parental role for the donor and most of those present at the debate seemed to agree on this point. Interestingly, of the parents interviewed by the Nuffield Council of Bioethics for an ethical review of the novel techniques, some said that they would tell their child about the IVF process and suggested that they would acknowledge the role of the donor as a “kind and generous person that has given a wonderful gift”. The donor, though it is unlikely that they would be identified, would therefore have a potent role in what Scully termed the ‘narrative’ of the child’s identity. Should this be reflected in the rights accorded to the donor?

The ‘public narrative’ that is built around the novel techniques will influence, perhaps even determine, the answer to this question and many others that surround this topic. It is a narrative to which we can all contribute. John Wyatt, an academic neonatologist and Emeritus Professor of Ethics and Neonatal Pediatrics at University College London, used his speech to pose the question: What language should we use to discuss this procedure? He stressed that there was “no neutral language”; whatever language we choose influences ethical responses. Headlines splashing talk of ‘three parent babies’ across the front pages, have been condemned by scientists such as Geoff Watts, and journalists, such as John Harris, alike and members of the audience and the panel were also quick to criticise the media. Wyatt encouraged us to extend this critical attitude to the language we ourselves were using, commenting that the phrase ‘slippery slope’ was a “pejorative term used by scientists”.

It cannot, however, be denied that sensationalist language attracts attention. The Lily Foundation’s Liz Curtis, who herself lost a child to mitochondrial disease, acknowledged the importance of bringing the issue into the headlines in order to open up the debate. It is, as Jackie Leach Scully commented, “extremely difficult to hold a public consultation about topics which are difficult and technically demanding” and building public engagement with the topic is essential if we are to prevent the discussion being dominated by what Scully called the “usual suspects”. These views met with some skepticism as Wyatt, and voices from the audience, questioned whether a meaningful and effective public response was possible. The fitness of the regulator was challenged and the discussion began to get lost in the shadowy world of politics and policymaking.

It was Lily’s Alison Maguire that drew us back to reality and, in my mind, concluded the debate. As Research Executive at the Lily Foundation, she holds a degree in biological sciences and liaises between the charity and the research initiatives that it supports. Her daughter died from mitochondrial disease in 2009, aged four. Her arguments were not simplistic, but her words held authority: “if we have the technology and ability to prevent children being born with these debilitating conditions…I see that as a positive thing”.

At the beginning of the evening, Mark Walport suggested that one of the purposes the debate should be to help those participating to “crystallize [their] opinions”. His choice of words was astute. After a week or more of being bombarded by headlines and opinion columns, it would be difficult not already to have had or heard some ideas about the new proposals. But a gut feeling or a received idea is rarely enough to foreground an informed response to a public consultation. Tuesday’s debate provided a forum in which a broad spectrum of ideas could be explored. Listening to different voices, understanding them and reacting to them, helps to draw your own opinions out of a murky solution of half-formed thoughts and pin them, crystallized, to the mast.

To respond to the HFEA consultation visit http://mitochondria.hfea.gov.uk/mitochondria/have-your-say.

Image credit: Wellcome Images
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