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Another step forward on the journey towards mitochondrial donation

5 Feb, 2015

Vicky and Jessica2

On Tuesday, MPs in the House of Commons voting overwhelmingly in support of mitochondrial donation – a new IVF technique that could allow families with mitochondrial disease to have healthy children. Despite some protestations that this was “rushed”, the vote represented the culmination of a decade’s work by researchers, policymakers, and families, which included an unprecedented number of scientific and ethical reviews and a public consultation on the issue. Despite this positive vote, the amendment still needs to pass in the House of Lords before coming into effect. The Trust’s digital communities editor Kate Arkless Gray describes waiting for this important result…

Feeling like you’ve helped to make a difference is great, but unlike my colleagues around the Trust who fund exciting scientific research (to the tune of hundreds of millions of pounds a year) or provide direct support for researchers, I’m usually more involved in telling the resultant stories. It’s not just those who make decisions on funding, but people around the Trust who work hard to create a positive environment for science, be it through policy, education, or public engagement work.

Professor Doug Turnbull, University of Newcastle/Wellcome Trust Centre of Mitochondrial Research

Professor Doug Turnbull, University of Newcastle/Wellcome Trust Centre of Mitochondrial Research

Over the past few months, I’ve been privileged to be part of a team made up of people from across the Trust, researchers at the University of Newcastle, and families affected by mitochondrial disease. Our aim was to ensure that MPs voting in the House of Commons debate on mitochondrial donation were able to cast an informed vote – one which we all hoped would see the approval of secondary legislation to allow further research on the technique and eventual licensing by the HFEA for its use in humans.

Since the announcement of the debate – at ~1030am last Thursday – we’ve had our work cut out. Explaining the science behind the technique, countering the fear invoked by headlines labelling resultant children as “three parent babies”, answering genuine questions about DNA, ethics and the lengthy process – three scientific reviews, a public consultation run by the Department of Health and an ethics review by the Nuffield Council on Bioethics – in the lead up to this point.

The researchers in Newcastle have been inundated for requests to explain their work, the founders of the Lily Foundation, who have both lost children to mitochondrial disease, shared their stories and supported other families who wished to show the effect it has on them. We saw the publication of letters of support from Nobel laureates, ethicists and academics from the UK and the rest of the world, willing us to ensure that UK law caught up with the pioneering techniques that our scientists have developed. There was discussion, debate, strong words from the Church of England and the moving stories told by those who had lost children to mitochondrial diseases. Countless articles covered the subject and many people took to social media to express their views.

From my desk, with Twitter streams galore cascading information and opinion down my screen, I was able to interact with MPs, scientists, ethicists, parents, journalists and members of the public, encouraging them to take a moment to learn a bit more about mitochondrial donation, the difference between mitochondrial and nuclear DNA, and the robust process of consultation and review that had taken place, together with the stringent regulatory structure of the HFEA.

With colleagues, I watched the parliamentary debate, and saw how just as the debate was going on in the Commons, people were discussing it online as they too watched the live stream of the debate.

Screen Shot 2015-02-05 at 14.38.29I didn’t know which way the vote would go, and waited nervously as votes were cast and counted. Just as I heard “The Ayes, three-hu” my computer starting buffering the stream. I couldn’t be sure that I’d heard correctly – it certainly didn’t look like there were so many MPs present from the coverage. Then it was confirmed, “the ayes-382, the noes-128”. There was a moment’s pause and then those of us watching from Trust HQ broke into spontaneous applause.

My colleague in the media team, Clare Ryan, (who had been doing sterling work arranging media interviews for lead scientist Prof Doug Turnbull and several families affected by mitochondrial disease) was in the public gallery in parliament. She sent me a message shortly after the announcement to say there had been tears of relief from those she was with. These are the families who are campaigning so hard to be allowed to choose whether to use this technique that brings real hope to them. Also present was Professor Doug Turnbull, the clinician who has lead the development of this technique, and been involved in numerous reviews and evaluations of the research over the past few years.

Later on, Trust head of communication Mark Henderson and I met with colleagues from policy – whose unstinting work over the last decade helped us get to this point – Clare, Prof Doug Turnbull and, media stars of the day, Vicky and baby Jessica, who has mitochondrial disease. At 13 months old, with a feeding tube and a cosy little white hat, Jessica was in her grandmother’s arms, melting the hearts of all around her.

The Commons vote to support mitochondrial donation takes us a step closer to a day when she could have a healthy brother or sister. A day when ground-breaking new science can leave the lab and be used in the clinic, allowing families choice and a chance of having healthy children. There’s still a long way to go before the first use of mitochondrial donation can be licensed by the HFEA – the motion needs to pass through the House of Lords – and there is still a lively debate around the issue.

Prof Turnbull told me he’ll never forget the cheer from the public gallery when the votes were announced. It was a cheer not only from people like him, who have invested years of their life on the science and policy work, but from the very people it could directly benefit. I may not be the one doing the science, or making the difference, but this is one story that I’m proud to tell. Thank you to all those of you who took an interest in this work, shared your views and took the time to contact your MPs – public discussion of these issues is important, and you all in your own way helped to make a difference.

Mitochondrial donation will now be debated and voted on in the House of Lords motion later this month. Full text of the parliamentary debate and a list detailing the ways MPs voted can be found on Hansard. The Wellcome Trust policy pages have detailed information about the consultations, background information and expressions of support mentioned above and you can read our previous posts on the subject on our blog.

 

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