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How you can help prevent mitochondrial DNA disease

27 Feb, 2014

B0003744 Nuclear transfer - pipette removed from egg

Today the Government launched a public consultation on draft regulations that would allow doctors to trial new IVF techniques to prevent mitochondrial DNA diseases in patients for the first time. If the regulations are introduced they could give families affected by these devastating diseases the choice to have children who are genetically related to them and free from a potentially debilitating or fatal condition.

The Wellcome Trust is a major funder of this ground-breaking research and our Strategic Planning and Policy Unit been working closely with the scientists to make sure this work will be brought to the clinic to benefit patients.

What is mitochondrial disease?

Mitochondria are often referred to as the cells’ ‘batteries’ as they provide the energy to power our bodies. The information required to create these ‘batteries’ is known as mitochondrial DNA. Around 1 in 200 children are born with errors in their mitochondrial DNA, but these may be mild or asymptomatic. In around 1 in 6500 cases these errors can cause more serious mitochondrial DNA diseases that often strike at a very young age and can lead to serious disability or even death. Mitochondrial DNA disease cannot be treated or prevented and is passed down from mothers to their children.

Professor Turnbull and his colleagues at the Wellcome Trust Centre for Mitochondrial Research at Newcastle University have pioneered new techniques that allow embryos to be produced that don’t contain the faulty mitochondria that lead to disease. They do this by taking the nuclear DNA (that contains the genetic information that makes us who we are) out of the egg with faulty mitochondrial DNA and putting it into a donor egg, which has healthy mitochondria.

These techniques are showing great promise but in order for patients to benefit from them once they are shown to be sufficiently safe and effective, the Government must pass new regulations to allow their use. Previous amendments introduced through the Human Fertilisation and Embryology Act (2008), which the Wellcome Trust helped influence, envisaged the development of these techniques and allow the Government to make these changes to the existing law.

What is the consultation?

The Government wants to find out what the UK public thinks of the proposed new regulations, which would allow the Human Fertilisation and Embryology Authority (HFEA) to grant doctors a licence to carry out this technique. These licenses would be granted on a case by case basis.

Previous public consultations on the ethics and public and scientific opinion of the techniques have shown broad support for allowing them to be used in humans. Now it is important the Government hears the views of patients, parents, doctors and researchers to influence how the regulations are made. 

Why should I respond?

Your view is important and unique and it will be helpful for the Government to hear it. They may get only a handful of responses, or many thousands, but as there is a range of opinions regarding these techniques, it is important that yours is heard.

If lots of responses make a particular point, it may sway the Government’s decision and we know personal experiences and examples are important in understanding mitochondrial disease.

How do I respond to the consultation?

You can quickly and easily submit your views online or by post if you prefer. Personal examples, stories and even pictures can be very powerful in helping you make your point. The consultation process includes a response form with questions to help focus your response, but you can also add further information if you think it is important to your view. The key is that you let them know what you think is important and why.

What should I say?

  • Say who you are, e.g. “I am a patient/researcher/parent…”
  • If you are answering the questions, make sure you read through all the questions first then answer the question they have asked (not the one you wish they had asked!)
  • Decide on your main message and make sure this comes across clearly.
  • Use evidence where possible and include real life examples or specific instances.
  • Keep it as concise as possible. Make it clear to read and write in plain English.
  • Copy your response to your local MP. This is a good opportunity to let the MPs, who will eventually vote on whether to approve these techniques, know why you feel strongly.
  • Send it in as early as possible – aim for well before the deadline.

If you want to respond but you’re not sure what to say, you could get in touch with an organisation that has a similar view to you. If you’re a Wellcome Trust funded researcher then you can get in touch with us to help inform our response.

What happens next?

Your response will help the Government and MPs decide what to do next. Parliament will debate and vote on the new regulations later in 2014 and will be influenced by what their constituents are saying to them.

If the regulations are introduced, doctors will still need to apply for a licence for each individual case in order to use the technique. If the regulations are introduced this year, it will mean when the science is ready patients won’t be left waiting for the law to catch up, and families can benefit right away.

This open consultation, entitled “Serious mitochondrial disease: new techniques to prevent transmission“, is open to submissions now.

Image credit: Jenny Nichols, Wellcome Images

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