HFEA launches public consultation, Medical Frontiers: Debating mitochondria replacement

The HFEA has launched a public consultation on the ethics of new IVF-based techniques designed to avoid serious mitochondrial diseases.

Around 1 in 200 children are born each year with a form of mitochondrial disease. Some children have mild or no symptoms but others can be severely affected and have a shortened life expectancy. Symptoms include muscle weakness, intestinal disorders and heart disease.

New techniques, known as mitochondria replacement, could enable women to avoid passing these diseases on to their children by using a donor’s mitochondria to create a healthy embryo, which would then be used in normal IVF treatment. Any child born following mitochondria replacement would share DNA with three people, albeit a tiny amount with the donor. These changes would affect the germ line, meaning the donor’s mitochondrial DNA would be passed onto future generations.

Mitochondria replacement is currently lawful in the laboratory, but the embryos cannot be used in treatment. The Government has asked the HFEA, as the expert independent regulator, to seek public views on whether these techniques should be made available to couples at risk of having an affected child.

Chair of the HFEA, Professor Lisa Jardine said:

“The Government has asked us to take the public temperature on this important and emotive issue.

The decision about whether mitochondria replacement should be made available to treat patients is not only an issue of great importance to families affected by these terrible diseases, but is also one of enormous public interest. We find ourselves in unchartered territory, balancing the desire to help families have healthy children with the possible impact on the children themselves and wider society.

We will use our considerable experience of explaining complicated areas of science and ethics to the public to generate a rich debate that is open to all.”

The HFEA has launched an accessible and interactive consultation website, which explains the science and ethical issues in different ways – including videos and downloadable ‘discussion packs’. Anyone will be able to register their views online or attend one of two, free consultation events in November.

ENDS


Notes to editors

  • Anyone who wishes to contribute their views to the consultation can do so via the HFEA website: www.hfea.gov.uk/
  • The HFEA is the independent regulator for IVF treatment and embryo research. Our role is to protect patients and the public interest, to drive improvement in the treatment and research sectors and to provide information to the public and policymakers about treatment and research. 
  • In Spring 2011, the HFEA carried out a scientific review of the safety and efficacy of methods to avoid mitochondrial disease (see www.hfea.gov.uk/6372.html), also commissioned by the Department of Health.
  • After this review, the Government asked the HFEA to seek public views on emerging IVF techniques designed to prevent the transmission of mitochondrial disorders.
  • The consultation and public dialogue is guided by an independent oversight group, made up of experts and those with a personal interest in the issue. The HFEA has run a series of public dialogue events over the summer, as well as commissioning a public opinion poll. The findings of the consultation and public dialogue will be reported to the Department of Health in March 2013.

For further information please contact the HFEA press office on 020 7291 8226 or email press.office@hfea.gov.uk

Page last updated: 14 September 2012