March 20, 2013

expert reaction to HFEA public consultation on mitochondrial replacement

The Human Fertilisation and Embryology Authority (HFEA) recently carried out a public consultation on new IVF-based treatments to avoid mitochondrial disease, gathering a wide range of view about mitochondria replacement and whether it should be made available to patients in the UK.

Dr Catherine Elliott, Director of Clinical Research Interests, Medical Research Council, said:

“The Medical Research Council funds research by UK scientists such as Douglas Turnbull and his team because we hope their work might one day lead to viable treatments for mitochondrial diseases. We consider that there is a compelling clinical need to assess and make these treatments available to women. To do this would require an amendment to UK law so it has been really important to engage the public in discussion and the HFEA have conducted a thorough consultation.  We recognise that there are those for whom aspects of such treatments raise ethical concerns. Parliament can now have a clearer view of what the wider public think and we hope that this will assist them in providing the legal framework needed to help those families affected by these distressing conditions.” 

Hugh Whittall, Director of the Nuffield Council on Bioethics, said:

“We welcome the HFEA’s work to explore public opinion on these potentially groundbreaking techniques and look forward to seeing how the Government will respond to the outcomes of the consultation.

“The Council concluded that the two new techniques represent an ethically acceptable treatment option for families affected by mitochondrial disorders, provided further research shows they are likely to be sufficiently safe and effective, and that families are offered appropriate information and support. Long term follow up of any children born via this method would be crucial. 

“Given that only some elements of the donor egg are used, not including the cell nucleus, we do not believe that it is legally or biologically correct to refer to the mitochondrial donor as ‘third parent’ of the resulting child. We therefore argue that mitochondria donors should not be treated in the same way as egg donors for IVF, for example, they should not be required later to be identifiable to those born from their donation.”

Sarah Norcross, director of Progress Educational Trust, said:

“UK scientists are leading the way in the prevention of inherited mitochondrial disease. Now, with the public voicing its clear support, UK policymakers can lead the way in showing how policy and regulation can keep pace with scientific developments, so that patients can benefit without delay.

“Techniques to prevent inherited mitochondrial disease received the green light from the Nuffield Council on Bioethics last year, and have now received the green light from the general public. We urge the government not to create unnecessary roadblocks, and to pass legislation so that families blighted by mitochondrial disease can benefit from these techniques.”