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Niamh lost her battle with mitochondrial disease aged just four-and-a-half
Pioneering work carried out at the Wellcome Trust Centre for Mitochondrial Research has led to the development of IVF techniques that bring hope to families with mitochondrial disease. Next week, MPs will have the chance to vote to allow further research to be carried out and enable the technique to be licensed (on a case-by-case basis) to allow affected families to have children who are free of debilitating mitochondrial disease. John Williams, Wellcome Trust head of science strategy and impact, explains why it is important that the law catches up with the science…
(Detailed information on mitochondrial disease can be found on the Wellcome Trust policy pages)
Mutations in the tiny powerhouses in your cells – the mitochondria – can cause serious disease and premature death. These mutations are thankfully rare, but the effect on families can be devastating. Researchers at the University of Newcastle have developed a technique that allows faulty mitochondria, which are passed from a mother to her children, to be replaced with healthy ones from a donor.
This research is a great example of collaboration and shows what can be achieved when patients and families work closely with insightful and talented researchers and clinicians. It is also an excellent opportunity to prove that the UK ecosystem is able to come together and allow pioneering work to be undertaken and to lead into meaningful, potentially game-changing, clinical practice.
In order not to miss this opportunity, we need the whole of the community to work together, from affected families to researchers – and now, importantly – legislators.
Over the past decade, public and scientific consultations have taken place, experts have shared their knowledge and scientific evidence, and families and others have shared their experiences of living with mitochondrial disease.
The existing legislation includes appropriately rigorous safety checks and licensing requirements. This is not something that we are seeking to change. For any new discovery we should of course have a full and open debate, check the evidence, and engage with the public before moving forward – as has been done on the issue of mitochondrial donation.
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We must also recognise that the pace of scientific discovery can out-pace changes in the law. We want to ensure that the law allows further research into mitochondrial donation to be conducted, so that when (and only when) it is deemed to be safe enough to ensure a baby can be born without mitochondrial disease, there is no unnecessary additional delay for patients wanting to use the technique.
Now we must trust that those responsible for approving amendments to existing legislation recognise the significance of their decision – not only for the families directly affected by mitochondrial disease – but also to show how the UK supports its world-class scientists.
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The discussion taking place in the House of Commons on Tuesday 3rd February is one of the critical last pieces in the jigsaw whose picture shows how open-minded, honest and evidence-based discussions enable the UK to be a beacon for translating patient-focussed, curative and health-transforming innovations from lab to clinic. This is something that we should be incredibly proud of.
Find out more about mitochondrial disease, and how mitochondrial donation could help, on the University of Newcastle research pages and in these previous posts on the Wellcome Trust blog. You can read the proposed amendment to the legislation on parliament’s website. If you want to encourage your MP to be present for the discussion and vote you can contact them, parliament’s website provides details on a variety of ways to do so and many MPs are on also on Twitter.
Image credits: Niamh and Niamh and Alison thanks to Alison Maguire, Needle and egg cell – Wellcome Images, Jigsaw, by Leighton Pritchard on Flickr – CC-BY-NC-SA
Filed under: Comment, Funding, Genetics and Genomics, Health, Human Fertilisation and Embyrology Act, Mitochondrial inherited diseases, News, Opinion, Policy, Strategic Awards Tagged: Evidence-based policy, Inherited mitochondrial disease, John Williams, mitochondrial donation, University of Newcastle Image may be NSFW.
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