June 12, 2012

expert reaction to Nuffield Council on Bioethics review of inherited mitochondrial DNA disorders

The Nuffield Council on Bioethics produced a report on the ethical issues surrounding the proposition to legalise techniques which would allow mitochondrial DNA from female donors to replace the faulty DNA of mothers who could pass disease on to their children. A briefing was held at the SMC to announce the findings of the report.

Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, which has funded pioneering research over ten years to develop the technique, said:

“Mitochondrial disease may manifest at any age and leaves many facing the gradual loss of mobility, sight, energy, independence and ultimately, their quality of life. It is currently not a disease that can be treated – techniques like this are a vital source of hope for the thousands affected.

“On the horizon we have an opportunity to allow women with mitochondrial myopathy to become mothers without facing the agonising possibility of passing their condition on to their child. A baby born using this technique is of its parents. What we are considering here is the donation of cell batteries alone – not of the DNA responsible for defining a person.

“The Muscular Dystrophy Campaign welcomes the response by the Nuffield Council for Bioethics on this technique, and hopes that the report will answer many questions for the public. We urge the government to recognise the human cost of delaying the further development of this treatment, and to act swiftly to allow it to progress.”

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

“We agree with the Nuffield Council on Bioethics that it would be ethical for families to use new techniques to prevent the transmission of inherited mitochondrial DNA diseases. Indeed, if such techniques are proven to be safe and effective, then in our view it would be unethical not to permit their use. Throughout June, the Progress Educational Trust will be running an opinion poll to investigate whether or not the public shares this view.”

Dr Catherine Elliott, Head of Clinical Research Support and Ethics at the Medical Research Council (MRC), said:

“We welcome this report, which presents a thoughtful analysis of the ethical issues raised by ongoing research into incurable mitochondrial disorders. Scientific progress that benefits human health is at its most effective when such questions can be raised and treatments are developed in a transparent and consultative manner.”

Sir Mark Walport, Director of the Wellcome Trust, which recently awarded £4.4 million to Newcastle University to establish a world-leading centre dedicated to understanding the biology of mitochondria and their relation to health and disease, said:

“It is every mother’s wish to raise a healthy family, but for a small number affected by potentially devastating mitochondrial diseases this is sadly not possible. Techniques which can be likened to ‘cell battery transplants’ provide much needed hope to these families. But these are new techniques and the Nuffield Council for Bioethics has rightly asked some very important ethical questions about their use. I am delighted to see that its report has found use of the techniques ethical.

“The report also provides helpful clarity in demonstrating that it is simply not right to refer to the donor as a ‘third parent’. Mitochondria contribute less than one in five hundred of the child’s genes, none of which alter appearance or personality.

“In light of this report, we urge the government to outline a timetable for considering amendments to legislation to permit use of the techniques in the clinic if, as we hope, the Human Fertility and Embryology Authority’s consultation in autumn shows public support for this important technology.”