An independent regulatory body has found there is broad support for a Newcastle-led pioneering mitochondrial transfer technique to allow families to have healthy children.

After a six-month public consultation, the Human Fertilisation and Embryology Authority (HFEA) has today announced its findings which showed general public support for mitochondria replacement being made available to families at risk of passing on a serious mitochondrial disease. The HFEA will now pass these recommendations to the Government.

See the conversation parents are having on this topic on Mumsnet

A team of researchers at Newcastle University, leading on the development of the technique in humans, aims to prevent the transmission of maternally inherited mitochondrial disorders. Mitochondria are required to produce the energy that powers our cells, therefore vital for all the major organs of our body to function properly.

Around one in 6,500 children are born with severe mitochondrial diseases, which include muscular weakness, blindness, fatal heart failure, liver failure, learning disability and diabetes that can lead to death in early infancy.

Parliament must now decide whether those who carry the risk of transmitting mitochondrial disease will be able to be treated in the UK. 

Reacting to today's announcement by the HFEA, Professor Doug Turnbull, Professor of Neurology and Director of the Wellcome Trust Centre for Mitochondrial Research at Newcastle University said:

"Mitochondrial DNA disease runs in families and there is no cure. The techniques we are working on here in Newcastle, could help hundreds of women have healthy children.

"We are very grateful for the detailed public engagement exercise carried out by the HFEA and welcome the supportive views of most of the public.

"We understand that more research is required but believe it is crucial that the Government moves now to draft the regulations so that mitochondrial patients in the UK will have access to this treatment."

Professor Mary Herbert, Professor of Reproductive Biology at Newcastle University said:  "We are currently working towards refining and perfecting the techniques with the aim of providing a safe and effective treatment to reduce the risk of mitochondrial DNA disease in the children of affected families. 

"It is really important that the regulatory and legal process required to permit the use of these techniques in clinical practice is progressed in parallel with the science"

Professor Alison Murdoch, Honorary Professor of Reproductive Medicine, added: "The next step is for Government to draft the regulations needed under the Human Fertility and Embryology Act so that an application can, when appropriate, be submitted to the HFEA to permit treatment.

"We welcome the HFEA's recommendation that mitochondria donors should be thought of as tissue donors, protecting the anonymity of the donor.

"Although further discussions will be needed, we believe that the reports submitted today are a very positive step towards achieving suitable oversight for these new treatments. "

This video explains why mitochondrial transfer is so important for patients.

Nobel scientists join call for techniques to be legalised

In a letter in  The Times (Thurs, 21st March 2013) scientists including Sir Tim Hunt and Sir John Sulston who are both recipients of the Nobel Prize for medicine, have joined calls for the IVF technique to be legalised:

Sir,

Mitochondrial disease is a devastating condition that can lead to death and serious disability, which is passed from mothers to their children and often strikes at a very young age. It is caused by faulty mitochondria – the “batteries” that provide cells with energy – and it cannot usually be treated or prevented.

New approaches to IVF pioneered by British scientists now promise to give families affected by mitochondrial disease the opportunity to have healthy children. The law does not permit these new techniques to be offered to patients, but in 2008 Parliament had the foresight to create a regulation – making power that allows the Government to change this through secondary legislation.

Approval of these new therapies properly requires public consent. The Human Fertilisation and Embryology Authority announced the results of a consultation which revealed the therapies have broad public support.
We therefore urge the Government to introduce the necessary secondary legislation before the end of this parliament, so that the HFEA can license clinics to treat affected families as soon as appropriate evidence of safety and effectiveness is available.

The UK is an international leader in this field. It is essential that the law keeps pace with science and public opinion, so that British patients can benefit from therapies that our medical advances make possible.

SIR JOHN SULSTON
BARONESS DEECH
BARONESS WARNOCK
LORD WILLIS OF KNARESBOROUGH
LORD WINSTON
SIR TIM HUNT
SIR JOHN SAVILL
SIR JOHN TOOKE
DR TED BIANCO

published on: 20 March 2013