News story

Views sought on changing the law to find cure for inherited mitochondrial disease

The Human Fertilisation and Embryology Authority has been asked to lead a public discussion. The public will be asked if they think the law…

The Human Fertilisation and Embryology Authority has been asked to lead a public discussion.

The public will be asked if they think the law should be changed to allow a new scientific procedure to be introduced that could prevent women with a mitochondrial disease from passing it to their children. The discussion will be launched later this year.

About mitochondrial disease

Mitochondrial disease is a potentially fatal inherited genetic condition that affects an individual’s mitochondria - the part of the body’s cells that produces the energy they need to function.

The disease affects everyone differently, but symptoms include poor growth, loss of muscle coordination, visual and hearing problems, mental disorders, heart disease and liver disease.

The condition affects approximately one in 5,000 adults. One in 6,500 babies are born with a severe form of the disease that can lead to death in early infancy. There is no cure.

It is estimated that around 12,000 people live with a mitochondrial disease in the UK and scientists estimate that the treatment could save the lives of around 10 children affected by severe forms of the disease a year.

The proposed procedure

A proposed procedure would use IVF to fertilise the egg of a woman affected by mitochondrial disease with her partner’s sperm.

The genetic material of the fertilised egg that determines the characteristics of the potential child would then be transferred to the shell of an egg donated by a woman who has healthy mitochondria. This procedure would not be allowed under the current law.

Public Health Minister Anne Milton said: “Mitochondrial disease, such as muscular dystrophy, can have a devastating impact on the people who inherit it. People who have it live with debilitating illness, and women who are affected face passing it on to their children.

“Scientists have developed a new procedure to do research to stop these diseases being passed on. But such a procedure would not be allowed in treatment under current law, so we are consulting the public as to whether we should change the law.”

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