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Avoiding transfer of mitochondrial diseases

In April 2010, researchers at the University of Newcastle developed techniques to avoid diseased mitochondria being passed from a mother to her children. This research is at the stage where it needs to be tested in humans. To enable this, new regulations are needed to allow the Human Fertilisation and Embryology Authority (HFEA) to issue a licence for such techniques to be used therapeutically.

Mitochondria are often referred to as the cell's 'batteries'. The information required to create these 'batteries' is known as the mitochondrial DNA, and this DNA can sometimes mutate. These mutations are passed from mother to child and can result in mitochondrial diseases. These diseases can cause fatal liver failure, stroke-like episodes, blindness, muscular dystrophy, diabetes and deafness, and affect around one child in 6500.

Amendments introduced through the Human Fertilisation and Embryology Act (2008), which the Wellcome Trust helped influence, envisaged the development of such techniques and provided the Secretary of State with the power to amend regulations to enable the HFEA to issue licences for these therapies. If these licences are issued, researchers will be able to undertake trials in humans that could ultimately lead to women with mitochondrial diseases being able to choose to conceive healthy babies, free from mitochondrial diseases.

The HFEA considered the efficacy and safety of the techniques and concluded that, if the techniques are proven to be safe and effective, it would be ethical for families to use them if they wish to do so along with appropriate levels of information of support. It also carried out a public consultation, which found the public to be broadly in support of permitting these techniques to be used.

At the end of June 2013, Chief Medical Officer Dame Sally Davies announced that the Department of Health would begin drafting regulations later this year that would then be taken to a further public consultation. It is expected that Parliament could begin debating these regulations as early as autumn 2013. If approved, the regulations would make the UK the first country in the world to give patients the option of using the ground-breaking IVF-based treatment.

Background information

Trust-funded related research

Selected press coverage to date

This page will be regularly updated; please revisit to find out about recent developments.

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