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A positive step forward on the road to mitochondrial donation

17 Dec, 2014

B0006053 Mitochondrion

Today the Department of Health has laid the regulations that set out how mitochondrial donation could potentially be allowed in the UK. The regulations will be debated and voted on by parliament in the New Year, and we hope that the outcome will bring hope to the families affected by mitochondrial disease, and allow important research to continue. The Wellcome Trust’s Clare Ryan explains why this announcement is a step in the right direction…

In the UK around 1 in 200 children are affected by faulty genes in the DNA of their mitochondria – small structures present in all our cells that provide us with energy and are commonly known as the ‘batteries’ of the cell. Many of those children will be asymptomatic or have mild, late-onset or undiagnosed problems, but around 1 in 6500 children will develop more serious diseases which can leave them with debilitating brain and muscle disorders. Many of the most seriously affected babies do not survive past childhood.

A new IVF technique, developed by scientists at the Wellcome Trust Centre for Mitochondrial Research at the University of Newcastle, could prevent mitochondrial disease being passed from mother to child, enabling families to have healthy genetically related children. The technique involves moving the nuclear DNA that carries all of the parents’ characteristics (height, intelligence, eye colour etc) from an egg or early embryo with faulty mitochondria, into an egg or early embryo with healthy mitochondria.

However, in order for this technique to be allowed government needs to pass secondary legislation to allow the HFEA to issue licences. Today, the Department of Health has published the regulations it is proposing to enable this to happen. The next step is for parliament to set a date for MPs to debate and vote on the regulations.

It is not an understatement to say that the regulations have been the subject of unparalleled scrutiny: this parliamentary debate will be the culmination of more than seven years work. There have been independent ethical reviews, three separate independent expert reviews of all the scientific evidence on the technique’s safety, and most importantly a widespread public consultation which has revealed broad support.

Jeremy Farrar, Director of the Wellcome Trust, summarised the long road patients, charities and scientists have travelled to get to this point: “Over the past seven years, Britain has been engaged in an exemplary process for evaluating scientific, ethical and public opinion about mitochondrial donation, which has revealed broad support on all three fronts.

“A parliamentary vote is the next logical step, and we urge MPs to support regulations that will allow the law to catch up with public and scientific opinion. Parents who know what it means to care for a sick and suffering child with mitochondrial disease are the people best placed to decide, with proper medical advice and safeguards, whether mitochondrial donation is right for them. They should not have to wait any longer to be able to make this choice.”

At the centre of this process are the families whose children are affected by mitochondrial disease. Many families, such as this one, have spoken eloquently about their hopes of conceiving a healthy child, or the possibility of their daughters being able to have unaffected children. In the end, this is about providing families reproductive choice – they are the ones who are in the best position to look at all the reproductive possibilities and make up their own decision.

In the UK we are very lucky to have an internationally respected regulator of IVF techniques, the Human Fertilisation and Embryology Authority (HFEA), which would oversee all aspects of this proposed treatment. Even if parliament votes through the legislation clinics will not be able to use the techniques immediately. Specialist clinics will still need to submit applications to the HFEA to use the technique for each patient that requests it. The HFEA will consider the safety and efficacy of the techniques and the appropriateness for each individual patient before deciding whether to grant a licence. We very much hope they are given the chance to take this next step.

For more information about mitochondrial disease please visit the Wellcome Trust’s dedicated mitochondrial donation policy pages or the website of the Lily Foundation, a charity that represents families with mitochondrial disease.

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