April 19, 2011

expert reaction to the report on mitochondrial disease commissioned by the HFEA

To coincide with the publication of the HFEA’s review of the safety and efficacy of techniques to avoid mitochondrial disease, a specific subset of genetic disorders.

Professor Doug Turnbull, Newcastle University, said:

“We are pleased to have received this endorsement from the HFEA. We are already beginning to address some of the experiments they have asked us to conduct, but this will take time. Our work relies on the generosity of donors who provide eggs for us to use in our research. This is the major limiting factor for our work. We would like to encourage more donors to come forward so that we can make rapid progress towards a treatment for these terrible mitochondrial diseases.

“Whilst we continue our work, we believe it is very important that the government makes a timetable for changes to the legislation so that these treatment options are available for patients as soon as possible.”

Sir Mark Walport, Director of the Wellcome Trust, said:

“We welcome this report by the HFEA, which recognises the huge potential of this research to benefit women who carry mitochondrial disease and wish to have children. These diseases are often devastating for patients and their families, but the ability to prevent their transmission is within our reach. It is our duty to these families to do all we can to enable them to raise a family unaffected by mitochondrial disease.

“Professor Turnbull and colleagues would like to carry out the necessary research as requested by the HFEA. We urge the Secretary of State to provide assurances that regulatory amendments will be forthcoming to enable this work to be used in the clinic.”

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

“It is vital that Andrew Lansley sets out a timetable for the introduction of new regulations, so that UK research into the prevention of mitochondrial disease does not lose its funding and its momentum, and so that new techniques for treatment can provide benefit in the clinic.”

Lord Willis, chair of the Association of Medical Research Charities, said:

“Given the current confusion over the future of the HFEA and the setting up of the new health research agency, it is important that the government presses ahead with developing the regulatory framework to enable UK medical science to maximise its progress in this area and ensure UK patients can benefit from research conducted here.”