July 22, 2014

expert reaction to Government response to consultation on draft regulations for mitochondrial DNA replacement therapy  

The Government responded to a public consultation on draft regulations for legalising new techniques for mitochondrial DNA replacement therapy, announcing that plans to change the regulations will progress.

Prof Frances Flinter, Professor of Clinical Genetics, King’s College, London

“Families who are affected by serious mitochondrial disorders, and their clinicians, will be relieved that the government is supportive of plans to develop new therapies. Many couples would like to have a healthy child soon, and while they understand that it takes time to assess the safety and efficacy of new treatments, they will be anxious about any further delays in bringing legislation before parliament.”

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said:

“A three-year consultation and review process has shown that the majority of people in the UK are broadly supportive of mitochondrial donation IVF. The public recognises its potential to prevent the inheritance of devastating mitochondrial diseases, giving women whose lives are overshadowed by these conditions the opportunity to bear children without the fear of passing on the genetic mutation. It is now up to the Government to ensure that these regulations are considered and approved by Parliament before the next general election in May 2015, or risk losing the progress that has been made towards taking this pioneering technique forward. We need to see a firm commitment to debating this issue in Parliament before the end of the year.”

Prof Doug Turnbull, Professor of Neurology, Newcastle University, said:

“We are pleased that the Government is still supportive of this important technique to prevent the transmission of serious mitochondrial disease. We would welcome a firm timetable for this to be tabled for debate in Parliament and become a legal treatment. We have patients waiting who could greatly benefit from this new IVF technique.”

Dr Jeremy Farrar, Director of the Wellcome Trust, said:

“As the Government’s latest consultation has again shown, there is broad public support for making mitochondrial replacement therapy available to patients. There is now no excuse for the Government not to table regulations for debate as soon as Parliament returns this autumn, so that the HFEA can licence clinics to treat affected families without delay once it is satisfied that any risks are acceptable.”

Sarah Norcross, Director of the Progress Educational Trust, said:

‘While we welcome the Government’s decisions, we are disappointed by the time it has taken to reach this point in the process. A year ago, the Government promised a consultation in autumn 2013 which ultimately took place in March 2014. We note that the Government now aims to provide an update by early autumn 2014 – we hope that this is not similarly delayed, and that these regulations are brought before Parliament at the earliest opportunity.’

Declared interests

Jeremy Farrar: The Wellcome Trustfunds the Wellcome Trust Centre for Mitochondrial Research http://www.newcastle-mitochondria.com/

Prof Doug Turnbull receives funding from the Wellcome Trust and Muscular Dystrophy Campaign for research into mitochondrial donation techniques

Robert Meadowcroft: “The Muscular Dystrophy Campaign does not have a financial interest in mitochondrial research.  We have been a long-term funder of research into mitochondrial disease, conducted by Professor Doug Turnbull and his team at Newcastle University.  Professor Turnbull was appointed a Vice President of the Muscular Dystrophy Campaign in 2013, an honorary position which carries no payment or reward.”