The Chief Medical Officer has today outlined support for a change in the law, which would allow an IVF technique to eliminate mitochondrial disease, and pioneered at Newcastle University, to be used in patients.

The techniques have been developed in human eggs by Professor Doug Turnbull and Professor Mary Herbert at Newcastle University.

Reacting to Professor Dame Sally Davies' announcement, Professor Doug Turnbull, Director of the Wellcome Trust Centre for Mitochondrial Research at Newcastle University said: “I am delighted that the Government is moving forward with publishing draft regulations this year and a final version for debate in Parliament next year. This is excellent news for families with mitochondrial disease. This will give women who carry these diseased genes more reproductive choice and the opportunity to have children free of mitochondrial disease. I am very grateful to all those who have supported this work.”

Mary Herbert, Professor of Reproductive Biology at Newcastle University said: “Today’s announcement is really encouraging news for families affected by mitochondrial DNA disease. The IVF-based techniques currently under development offer the possibility of greatly reducing the risk to children of affected women. We are in the fortunate position of having substantial Wellcome Trust funding to continue to refine the techniques and to optimise their safety and efficacy.

“We have made good progress in optimising the pronuclear transfer technique and will continue to need a supply of healthy eggs to perform further tests on the safety of the technique. Obviously, the timescale will depend on the outcome of those tests.“

Alison Murdoch, Professor of Reproductive Medicine at Newcastle University, part of the team which has developed the technique added: “This is great news for UK science and gives hope to women who just want a healthy baby. The UK government has made a moral decision.

“The death of a baby is a parent’s worst nightmare. Our research is leading to a pioneering IVF technology to reduce that risk for mothers who have abnormal mitochondria. There is still more research to do, but this decision means that we could eventually be allowed to offer it as a treatment.

North East women are being asked to consider donating their eggs for research in order to push forward a technique pioneered at Newcastle University which could eliminate serious inherited disorders.

In the North East, there was an overwhelming response when the research started and over 800 women volunteered.  Not everyone is suitable to be a donor though so Newcastle fertility experts still need more volunteers to progress the work into an accepted treatment.

There is an egg-sharing scheme where women undergoing IVF can receive a reduction in their treatment cost if they donate half their eggs for research – using their remaining eggs for their own IVF.

Professor Alison Murdoch, Professor of Reproductive Medicine at Newcastle University and Head of Newcastle Fertility Centre at Life, part of Newcastle Hospitals NHS Foundation Trust, said: “We’ve had amazing support from women in the North East who have shown great thoughtfulness and compassion taking part in this process and we expect and hope that this continues so that we can change the lives of the many families affected.”

Donated eggs will be used to progress pioneering work in mitochondrial transplant. This is when the nucleus is removed from the donor egg and replaced with the fertilised nucleus. This new fertilised egg contains the DNA of the father and mother, and the mitochondria from the donor.

Mitochondrial diseases are passed on by the mother and the new technique, which has been developed at Newcastle University, would reduce the risk of transmission of these disorders. This would allow the mother to give birth to a healthy child and eliminate mitochondrial diseases from the family line.

In March this year the Human Fertilisation and Embryology Authority announced the results of their public consultation. They found broad public support for the use of the technique. In June 2012 the Nuffield Council produced a report which found that the technique would be an ethical treatment option for affected families.

Professor Robin Lovell-Badge, Head of Developmental Genetics, MRC National Institute for Medical Research, said: “This is excellent news for women at risk of having children with severe mitochondrial disease due to mutations in mitochondrial DNA. There is nothing in the science conducted to date to suggest that the new techniques (maternal spindle transfer, MST, or pronuclear transfer, PNT) are unsafe, indeed when considered in the context of what happens to children born with these diseases, it is difficult to imagine that the new techniques will be anything but a better option to allow these women to have their own genetic offspring. Moreover, there is no reason why the regulations should not be accepted in parallel to, or even in advance of, the remaining experiments that are required to give additional confidence in the methods. It will of course be a brave decision for the first families, and for the HFEA as the regulator, to decide to go ahead once the regulations are approved by Parliament, but more often than not, progress requires some element of bravery.”

Dr Ted Bianco, Acting Director of the Wellcome Trust, said: “As a funder and advocate of this cutting edge research, we are extremely pleased to see the Department of Health keeping regulation apace with research developments.  This will ensure families affected by mitochondrial diseases are able to access these technologies in the clinic at the earliest opportunity if they are shown to be safe, giving them hope of having children free from these devastating disorders.”

Read here further reaction to the announcement.

Mitochondria are the batteries of the cells. In some people there is a fault in the mitochondria which can cause diseases and around one in 200 children are born each year with mutations which in most cases cause only mild forms of mitochondrial disease. However, around one in 6,500 children are born with severe mitochondrial diseases, which include muscular weakness, blindness, fatal heart failure, liver failure, learning disability and diabetes and can lead to death in early infancy.

Any woman based in the North East interested in becoming an egg donor to the research can find out more by completing the form on the website.

Fact box:

• Women who wish to donate eggs altruistically need to be 35 or under

• Women need to live in the North East so that medical care can be provided

• Donors will receive £500 compensation

• Women who are having IVF treatment can continue to egg share for research and will have their treatment costs reduced by about £1,500, or to donate to another couple for a cost reduction.

• To recieve more information:  www.ncl.ac.uk/eggdonate

View here a video explaining the work

published on: 28 June 2013