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The Government has launched a consultation on draft regulations for the use of new techniques to prevent mothers passing on serious mitochondrial diseases to their children.
Dr Catherine Elliott, Director of Clinical Research Interests, Medical Research Council, said:
“From very early stages we believed it important to support both the excellent science in this area, and the ethical framework in which it could develop. With the publication of the draft regulations, UK scientists are now at the exciting point of being able to work within a robust legal and ethical framework to progress these techniques into a means of preventing these appalling diseases. After the carefully considered public dialogue on the issue, we’re extremely pleased that the government has moved that goal an important step closer.”
Alastair Kent, Director of Genetic Alliance UK, said:
“We welcome today’s consultation launch as another vital step towards potential delivery of this intervention in the clinic.
In considering the latest development, we should keep those who hope to benefit from this intervention at the forefront of our minds. The majority of these couples will have found that they are at risk of having a child with a mitochondrial DNA disease as a result of the birth of a child with the condition or because of an unsuccessful pregnancy. Their families have already been affected by mitochondrial DNA disease. This innovative treatment is their first chance to be certain that their future child will be free from a mitochondrial DNA disease. The value of this certainty to a couple is huge. We look forward to examining these draft regulations in detail and responding in due course.”
Prof Peter Braude, Emeritus Professor of Obstetrics and Gynaecology, King’s College London, said:
“I am pleased that the government has been brave enough to follow through on their promises given during the 2008 revision of the Human Fertilisation and Embryology Act, to bring before parliament an option to help a small but deserving portion of society blighted with the spectre of transmitting mitochondrial disease to their children. Although rare, the effects of mitochondrial disease are devastating on those families, and the technology proposed, will bring hope to those carrying the disorders.
It is true that genetic alteration of disease risk is an important step for society and should not taken lightly. However the proposed changes to the regulations ensure it will be limited to informed couples, who understand from sad personal experience the significant effects of their disease, and are best placed to balance the risks of the technology with the possibility of having children without mitochondrial disease.”
Dr Jeremy Farrar, Director of the Wellcome Trust, said:
“It is now almost a year since a major public consultation found broad support for the use of new IVF techniques for preventing mitochondrial diseases, so we are pleased that the Government has now published draft regulations that would permit this. Once further public consultation on the detail of these regulations is complete, we urge the Government to move swiftly so that Parliament can debate the regulations at the earliest opportunity and families affected by these devastating disorders can begin to benefit.”
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said:
“News that the wait for proposed amendments to genetic research regulations to be shared with the public is over will be welcomed by many families living with mitochondrial disease. We have supported the Government’s review of the mitochondrial transfer IVF technique throughout, in the firm belief that open, thorough and transparent dialogue is critical. However, it will soon be two years since the initial consultation with the public was announced and three since the review began. There have been lengthy waits at every stage, and we now call on the Government to ensure that regulations are passed before the next general election, so that the technique can be moved towards clinical trials as soon as possible.
Encouragingly, we have seen that, when given in-depth information, the majority of people in the UK are broadly supportive of this technology. We now need to see a prompt, efficient discussion with the public on the rules that will govern how it is taken forward.”
Sarah Norcross, Director of the Progress Educational Trust, said:
“The Government has again indicated its commitment to permitting mitochondrial replacement, by putting out these regulations for public consultation. Families afflicted by mitochondrial disease urgently need the Government to pass the legislation necessary for these techniques to be used in the clinic.”
Prof Doug Turnbull, Professor of Neurology, Newcastle University, said:
“I am delighted that the Government has published the draft regulations. This is very good news for patients with mitochondrial DNA disease and an important step in the prevention of transmission of serious mitochondrial disease”