Mitochondrial donation plans progress following consultation

23 Jul 2014 12:51 PM

Plans to legalise use of new techniques to prevent mothers passing on serious mitochondrial diseases to their children are to progress. 

Mitochondrial disease is passed from mother to child through faults in the mitochondrial DNA. It is estimated that 1 in 6,500 children are born every year in the UK with a serious mitochondrial DNA disorder.

A consultation on proposed new regulations resulted in more than 1,850 responses. Following consideration of these the department has agreed to:

• keep the definition of the mitochondrial donation techniques as they are set out in the draft proposals
• continue with plans that the Human Fertilisation and Embryology Authority (HFEA) would have to be satisfied that there is both a particular risk of mitochondrial abnormality and a significant risk the person will develop a serious illness or condition
• the HFEA will consider each application on a case-by-case basis
• only non-identifying information about the mitochondrial donor will be released to people born following mitochondrial donation when they reach age 16
• clarification will be given to the consent requirements around the use and storage of eggs and embryos used in the mitochondrial donation techniques
• further consider the recommendations of the Expert Panel, refine the draft regulations to take account of changes identified during the consultation, and discuss with the HFEA an appropriate approval process

The department will consider the timing of the regulations in the light of these actions and aim to provide an update by early autumn.

See full consultation response.

Serious mitochondrial disease can have a devastating effect on families, including the premature death of children, painful, debilitating and disabling suffering, long-term ill-health and low quality of life.