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Government to seek public views on changing the law to find cures for inherited diseases

News Release issued by the COI News Distribution Service on 19 January 2012

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.

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.”

Minister for Universities and Science David Willetts said:

“The UK is a world leader in medical research and the Government is committed to getting the regulation around this right, in a way that commands public confidence.

“Scientists have made an important and potentially life-saving discovery in the prevention of mitochondrial disease. However, as with all developments in cutting-edge science, it is vital that we to listen to the public’s views before we consider any change in the law allowing it to be used.”

The purpose of the public dialogue is to review the ethical, social and regulatory issues involved if mitochondrial transfer is to be permitted for use in clinical treatment, and to contribute to HFEA’s advice to the Secretary of State for Health. The discussion will take place later this year and the findings published towards the end of 2012.

Notes to Editors

The Human Fertilisation & Embryology Act 1990, which came in to force on 1st August 1991, specifically prohibited any activity that involved replacing a nucleus of a cell of an embryo with a nucleus of a cell taken from any other person, embryo or subsequent development of an embryo. The prohibition made mitochondrial donation / transfer unlawful in the UK.

In October 2009, the 1990 Act was amended to introduce a regulation making power that, if enacted, would enable mitochondrial transfers to take place.

The public discussion follows a review of the safety and efficacy of the procedure undertaken by HFEA on behalf of the Government last year.

For press enquiries, please contact the DH press office on 020 7210 5221.

Contacts:

Department of Health
Phone: 020 7210 5221
NDS.DH@coi.gsi.gov.uk