Public Consultation on Mitochondrial disease

The public will be asked if they think the law should be changed to allow science to move a step forward so a cure could be found for potentially fatal inherited diseases, the Government has announced today.

The Human Fertilisation and Embryology Authority (HFEA) has been asked to lead a public discussion to ask if a new scientific procedure, which could prevent women with mitochondrial disease from passing the illness to their children, should be introduced. This will be launched later this year.

Mitochondrial disease is a 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 ten children affected by severe forms of the disease a year.

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

Source: NDS (C.O.I.)