Newcastle University mitochondrial replacement therapy research in the spotlight

A debate in the Commons on mitochondrial replacement therapy has thrust Newcastle's pioneering research into the spotlight

Alison Murdoch, professor of reproductive medicine at Newcastle University and consultant at Newcastle Fertility Centre at Life
Alison Murdoch, professor of reproductive medicine at Newcastle University and consultant at Newcastle Fertility Centre at Life

This week a debate into a fertility treatment developed in the North East once again thrust ‘three-parent’ IVF into the spotlight.

Experts at Newcastle University have spent many years developing the pioneering fertility technique known as mitochondrial replacement therapy, which allows the successful transfer of DNA between two human eggs.

It is the first time such a system has been used and the ground-breaking project has the potential to help eradicate inherited disorders known as mitochondrial diseases, which affect around one in 5,000 people the UK.

Yet the treatment is dividing opinion and a motion was passed in Parliament on Monday calling on the Government to delay bringing forward regulations on the technique.

Some people say the treatment is “a great piece of British scientific advance and we should congratulate the scientists at Newcastle University who have been in the lead of this research,” while others believe it is a way of developing “genetically modified people” and is a slippery slope to creating designer babies.

However, one thing no-one can deny is that those affected by mitochondrial disease have to deal with a range of debilitating health complications that can blight a family for generations.

Mother-of-one Nicola Parker, 49, of Felling, Gateshead, was diagnosed with the condition only seven years ago after struggling with symptoms most of her life.

The personal assistant’s daughter, Carly, 19, also has the illness and requires a wheelchair to get about due to severe muscle weakness in her legs.

Nikki Parker, who has inherited mitochondrial disorder
Nikki Parker, who has inherited mitochondrial disorder
 

Mrs Parker, who is married to Glen, 41, said she very much welcomed mitochondrial replacement therapy developed by scientists in the North East. She said: “Sometimes I feel like I’m in my 80s as I’m that tired at the end of the week. My life can consist of me making tea, having a bath and being in my bed by 10pm.

“Mitochondrial disease is a horrendous condition as it affects people in so many different ways.

“I was not diagnosed with the illness until I was 42 years old, but I was glad to have a diagnosis as it meant that I knew what my condition was and I didn’t have to struggle anymore.”

Medics told Mrs Parker that she had mitochondrial disease the same year that her daughter, Carly Forster, was also found to have the illness. The teenager has a severe case of the illness as she is unable to walk unaided and has required the use of a wheelchair for the past three to four years.

“I would not have had kids had I realised I’d the condition because I would not want to put them through the health problems that come with the illness,” explained Mrs Parker.

“It is amazing to think that in the future mitochondrial replacement therapy could be eliminated and a child can be given the chance of a normal, healthy life. Nobody wants to be born with anything wrong with them. If this new fertility treatment is given the go ahead in the future then it will be fantastic.”

Mitochondrial diseases are passed on by the mother and the new technique would reduce the risk of transmission of these life-limiting disorders. This would allow a mother to give birth to a healthy child and eliminate mitochondrial diseases from the family line.

Mitochondrial diseases include muscular weakness, blindness, fatal heart failure, liver failure, learning disability and diabetes and can lead to death in early infancy.

Nikki Parker, who has inherited mitochondrial disorder
Nikki Parker, who has inherited mitochondrial disorder
 

The fertility treatment involves taking the nucleus of an embryo from a mother with defective DNA and putting it into the egg of a woman with healthy DNA. This healthy egg is then implanted back into the first woman, allowing them to create a baby free of genetic disease.

A child produced this way would have DNA from two women and a man. The nuclear DNA, which influences characteristics such as sex, height and eye colour, would come from the mother and father. Only 0.05% of DNA is from the female donor. If legalised, the UK would become the only country in the world to allow children with three people’s DNA to be born.

The motion on Monday passed unopposed in the House of Commons but this has no binding effect on the Government. The debate focused on the public safety issues surrounding the IVF technique.

However, Health Select Committee chair Sarah Wollaston said that the Government should not delay bringing forward legislation and criticised the language used by those opposed to the treatment.

Dr Wollaston said: “I rise to urge you not to delay bringing forward the regulations and I urge the House not to lose sight of the child, not to lose sight of the children and their families who are devastated by mitochondrial diseases.

“Of course it’s absolutely right that this House debates the ethics but I think at times the language used has clouded those arguments.”

MPs in the North East at the debate were keen to praise Newcastle scientists for their work and dedication in developing the fertility technique.

Newcastle Central MP Chi Onwurah said: “I am proud that in Newcastle Central, my constituency, Newcastle University has pioneered research into variations on IVF treatments and procedures that can prevent the transmission of the genetic mutations that cause devastating disorders.”

Iain Buist Ms Onwurah, MP for Newcastle upon Tyne Central
Newcastle M.P Chi Onwurah
 

For Sharon Bernardi the thought of not allowing mitochondrial replacement therapy to be carried out is unbearable to think about.

The 48-year-old and her husband, Neil, of Springwell, Sunderland, have lost all seven children to mitochondrial disease, the majority dying within just a few hours of being born.

Their son Edward, who suffered from Leigh’s disease, became the oldest person in the world to survive the condition before he died at the age of 21.

Mrs Bernardi has a heart defect and mobility problems caused by an inherited mitochondrial disorder.

She said: “The reason I support the technique is that I do not want other families to go through what we’ve been through if it can be prevented.

“I can’t do anything about what has happened to my children, but Edward’s life has to make a difference for somebody else.

“My son would here today if he had not been affected by the condition. Nobody should have to bury a child and mitochondrial replacement therapy is a way of preventing this from happening.”

Women in the North East are now being asked to donate their eggs to allow research and studies in mitochondrial replacement therapy to continue in the region.

Alison Murdoch, professor of reproductive medicine at Newcastle University and consultant at Newcastle Fertility Centre at Life said: “The technique we are developing at Newcastle University has the potential to help hundreds of women in the UK have healthy babies that are free from mitochondrial diseases, which blight families down the generations.

“But to enable us to carry out further work to develop the treatment we need eggs, and that is where the people of the North East can make a huge contribution.

“We always need more people to come forward to donate eggs, even if they are not having fertility treatment. As well as helping other women, their generosity is keeping Newcastle at the forefront of medical research.”

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