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expert reaction to announcement of date for House of Commons debate on mitochondrial donation

The government has announced that a debate will take place on Tuesday 3rd February in the House of Commons on the proposed regulations for mitochondrial donation techniques.

 

Ms Aisling Burnand, Chief Executive of the Association of Medical Research Charities, said:

“A vote in favour of these Regulations will enable progress in  life saving treatments and give hope to hundreds of families in the UK and internationally. No medical advance is without risk. However, the robust scientific  evidence, positive ethical opinion and broad  public support for these Regulations mean the time is now right for parliament to support mitochondrial donation under the careful control of the Human Fertilisation and Embryology Authority’s rigorous licensing procedures.”

 

Professor Lisa Jardine, UCL and former Chair of HFEA, said:

“ Between 2011 and 2014, while I was its Chair, the HFEA was responsible for a carefully designed and thorough  consultation on mitochondrial replacement – one of the most extensive and  impressive public consultations ever conducted. We consulted with the public, clinicians, ethicists, religious groups and researchers, online and face to face. We commissioned 3 separate reviews of the science, led by a panel of the most distinguished experts. I would maintain that this process and its outcome were an example of what the very best evidence based policy looks like. The suggestion in the press this week that mitochondrial replacement therapy has not been thoroughly reviewed, and that the move to legalise the process is over-hasty, beggars belief.

“This is just the beginning of a lengthy process. No-one is suggesting that there are no scientific issues still to be resolved. At every stage, the scientific review body has stressed that more experiments will need to be carried out. However it is perfectly reasonable that after a 3 year public debate the time is ripe for this technique to be made lawful, allowing the full regulatory process to begin.”

 

Prof. Justin St. John, Centre for Genetic Diseases, MIMR-PHI Institute of Medical Research, Monash University, said:

“I agree that PBT is still in its infancy and that a number of studies should be conducted to determine whether the technique is safe and appropriate to use to treat women who are carriers of mitochondrial disease. However, PBT is one of three proposed techniques and each requires further validation, as proposed in the report. My concern is that each technique is different and may give rise to different patterns of mitochondrial DNA transmission and selection of any accompanying defective mitochondrial DNA. Therefore, each technique should be fully validated in this respect. As well as analysing fetal development in a non-human primate model, it is essential to analyse offspring to determine that no abnormalities appear at least during early life.”

 

Dr Stephen Harbottle, Chair, Association of Clinical Embryologists, said:

“As Clinical Scientists in reproduction, Embryologists are duty bound to carefully evaluate novel groundbreaking procedures and techniques and the subject of mitochondrial donation is no exception. This technique offers genuine potential for the development of a preventative procedure with a very clear application which will enable people affected by mitochondrial disease the choice to prevent their children inheriting a condition. The Association of Clinical Embryologists (ACE) strongly supports the decision to debate the subject in Parliament now that a thorough and favourable ethical and public consultation has been concluded.  We furthermore urge the Government to pass legislation to enable the continued development of the technique towards clinical availability.”

 

Prof. Dagan Wells, Associate Professor at the NIHR Biomedical Research Centre, University of Oxford, said:

“Disorders involving defective mitochondria can have catastrophic consequences for the affected individuals, sometimes causing death during infancy. For many years it has been possible to diagnose mitochondrial conditions, but what then? There have been few treatment options and no cure. Now, after years of careful research, we are finally at a point where a cure for mitochondrial disorders may be within reach. There has been an opportunity for public consultation and this has revealed broad support for the use of this therapy under appropriate regulation. The most telling thing is the support for mitochondrial donation from affected families. None of us can understand the impact of a mitochondrial disorder as well as they do, so their voices need to be heard. The way in which rigorous scientific research and vigorous public debate have been carried out in parallel in this instance will serve as a model for how ethically challenging scientific advances should be considered for clinical use in the future. This is the correct time for the possibility of mitochondrial donation to be discussed by the House of Commons.”

 

Mrs Angela Douglas, Chair of the British Society of Genetic Medicine, said:

“The British Society of Genetic Medicine (BSGM) has followed the progress of the mitochondrial therapies debate with interest. After reviewing the evidence presented the BSGM will support carefully regulated trials of mitochondrial replacement therapies in the UK, with long term follow up. This will benefit couples who wish to avoid having a child with a severe untreatable maternally transmitted mitochondrial disorder.”

 

Dr Dusko Ilic, Reader in Stem Cell Science, King’s College London, said:

“Mitochondrial diseases are absolutely devastating to individuals and families, and as a society we have a moral obligation to help those affected wherever possible. Here we have an opportunity to help.

“Worries that the mitochondrial genome will somehow affect the phenotype of the baby are baseless. Mitochondrial DNA encodes only 37 genes, whereas the nuclear genome codes for 20,000-30,000 genes. All mitochondrial genes code for proteins, which play a role in metabolism, and speculations about other roles of mitochondrial genes such as their influence on the nuclear genome are only speculations and nothing else. The phenotype of a child is likely to be affected more by the maternal metabolic environment of a surrogate mother than by a new set of mitochondria, and we have now completely accepted surrogacy.”

 

Mr James Lawford Davies, Partner, Lawford Davies Denoon, said:

“The draft Regulations are necessary to enable an egg or embryo created using mitochondrial donation processes to be lawfully used in treating patients.  As the law stands, eggs and embryos which have been subject to mitochondrial donation cannot be used in treatment because the processes necessarily involve the replacement of the affected mitochondria to prevent transmission of serious mitochondrial disease – hence the need for the draft Regulations.

“The draft Regulations do not permit PNT or MST, and do not allow these techniques to be used – rather, they permit the HFEA to consider applications for licences permitting the use of these techniques in treatment. This is an important distinction: if the draft Regulations become law, it does not follow that the HFEA will grant licences for the techniques to be used imminently, or indeed at all (though I hope that they will). As with all licence applications, the HFEA will consider whether the proposed activity is safe, and whether the applicant has the necessary staff, expertise, skill and equipment to perform the proposed activity. The draft Regulations simply allow this further review process to begin.”

 

Prof. Robert Lightowlers, Director of Institute for Cell and Molecular Biosciences and Professor of Molecular Neuroscience, Newcastle University, said:

“Mitochondrial donation would offer many women with mitochondrial defects a real possibility of having children free of this potentially life-threatening disorder. It is gratifying to see the marrying of high quality scientific research and public consultation leading to a debate in the House of Commons that may result in endorsing such a life-affirming option.”

 

Dr Gillian Lockwood, Medical Director of Midland Fertility and reproductive ethicist, said:

“As a junior paediatrician, I looked after babies with mitochondrial disease and shared the suffering of the parents that wanted their ‘own’ genetic baby but wanted him or her to have the prospect of a healthy life.

Mitochondrial donation now makes that possible. Parliamentary discussion must not be swayed by alarmist talk of ‘slippery slopes’ and ‘designer babies’. Scientists and clinicians working in the field should be trusted to offer the best possible care available to women at risk of passing on debilitating mitochondrial diseases.”

 

Prof. Darren Griffin, Professor of Genetics, University of Kent, said:

“A full and frank debate on mitochondrial donation and its benefits for the many families that carry these debilitating illnesses is a priority. In this country we pioneered IVF and Preimplantation Genetic Diagnosis (PGD), not just through scientific advance but also through a sensible and balanced approach to ethics and social policy. In my opinion, we should do the same in this case; the benefits of mitochondrial donation far outweigh any perceived risks or ethical concerns.”

 

Prof. Frances Flinter, Consultant in Clinical Genetics at Guy’s & St Thomas Hospital said:

“The outcome of the very detailed scientific reviews indicates that it is absolutely the right time to debate the possibility of changing the law to allow carefully regulated treatment trials to take place in the UK. The number of women carrying a mitochondrial disorder who could benefit from the development of a new therapy that would enable them to have a healthy child is even larger than we originally thought.”

 

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

“Over the past seven years, Britain has been engaged in an exemplary process for evaluating scientific, ethical and public opinion about mitochondrial donation, which has revealed broad support on all three fronts. The Government is right to ask Parliament to support regulations that will allow the law to catch up with public and scientific opinion, and we urge MPs and peers to vote for them.

“Parents who know what it means to care for a sick and suffering child with mitochondrial disease are the people best placed to decide, with proper medical advice and safeguards, whether mitochondrial donation is right for them. It is time to allow them to make that choice.”

 

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

“This debate will be a landmark moment for families affected by mitochondrial disease who could benefit from this IVF technique. A vote in favour of regulations could give women the chance to have a healthy child without the fear of passing on this painful, debilitating condition.

“This is an important step and while we understand some people will have reservations, this technique has moved successfully through the necessary ethical and public reviews, and a positive result in this debate is now vital to allow further progress.

“Together with our supporters and families, we are ready to meet with MPs to make sure they understand the full human benefit of moving forward with mitochondrial donation IVF.”

 

Ms Sarah Norcross, Director of The Progress Educational Trust (PET), said:

“We are delighted that the Government is making this a priority.

“Mitochondrial donation involves a number of complex issues, and so it is important that these Regulations are debated rigorously by Parliament. We are confident that once MPs understand the relevant techniques, and what they mean to families affected by devastating mitochondrial diseases, the majority will vote in favour. There will always be a small number who are opposed to due to religious or other convictions, but ultimately the people best placed to decide whether mitochondrial donation is right for them are the families who may benefit, in consultation with their medical team.”

 

Prof. Adam Balen, Chair of the British Fertility Society, said:

“Mitochondrial disease results in an incurable, debilitating illness that affects all parts of the body, in particular leading to loss of function of the muscles, brain, heart and other organs, which in severe cases leads to progressive weakness, blindness, deafness, dementia  and death at an early age.  Mitochondrial donation technology enables families affected by mitochondrial disease to have healthy children.  This science behind this technology has been rigorously developed and the subject of external  scientific, ethical and legal scrutiny as well as having received enormous public support through consultations conducted by the Human Fertilisation and Embryology Authority (HFEA) which will also ensure tight regulation going forward. The British Fertility Society urges the Government to pass legislation enabling this vital treatment to be available to the families who so desperately require it.”

 

Declared interests

Dr Stephen Harbottle: ACE as an organisation has nothing it needs to declare. I was one of the authors on the Nature paper published by the Newcastle Group in 2010 as I was a member of the project team during my time in Newcastle.

Dr Gillian Lockwood: I am medical director of an IVF clinic which sees NHS and private patients. I don’t envisage ever treating patients with this therapy as it should be restricted to specialist centres (where other clinics could refer: like pre-implantation diagnosis)

Prof. Robert Lightowlers: I am a member of the Wellcome Trust Centre for Mitochondrial Research and so we are sponsored by them to perform research in this area.

Prof. Darren Griffin: I am the Director of the Centre for Interdisciplinary Studies of Reproduction (CISoR) and thus work closely IVF clinics on joint projects.  None of these involve mitochondrial studies at present however. http://www.kent.ac.uk/cisor

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

 

*The issue of mitochondrial donation is to be debated in the House of Commons on Tuesday 3rd February.

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