Preventing the transmission ofinherited mitochondrial disorders.

Call for evidence on mitochondrial donation

The Nuffield Council for Bioethics has launched a call for evidence on the ethical issues raised by techniques to prevent the transmission of inherited mitochondrial disorders.

These techniques could be used in combination with in vitro fertilisation (IVF) and egg donation to prevent children from being born with inherited mitochondrial disorders. At present, there are no known cures for these disorders, which can cause severe symptoms such as heart failure, liver failure and blindness, and may cause death in babies, children and young people. Approximately one in 250 live births, and at least one in 10,000 adults in the UK are affected by mitochondrial disorders.

Research is currently at an experimental stage on these techniques, which use healthy mitochondria from a donor to replace the mother’s unhealthy mitochondria at the point of reproduction. However, it is currently unlawful in the UK to offer such techniques for treatment.

The Council set up a Working Group to explore the ethical issues raised by mitochondrial donation in November 2011. The Working Group will consider the evidence it receives before publishing a final report later this year. The final report is intended to identify the ethical questions raised by these emerging technologies, and to elaborate these issues with a view to stimulating and informing further discussion, deliberation and debate.

“If these procedures were permitted for treatment, the expectation is that the resulting children would be born free from inherited mitochondrial disorders, and it would allow women to use their own eggs to have a baby” said Dr Geoff Watts, who is chairing the Council’s inquiry. “However, some people may be concerned about the ethical acceptability of these techniques, which involve making genetic changes that will be passed on to all subsequent generations if the treatment is successful. At this stage of our investigation we are seeking evidence from a wide range of people on these important issues”.

This call for evidence is open to everybody. We would particularly like to hear from affected families, potential donors, researchers, medical professionals and anyone who has an interest in this area.

The Working Group is seeking evidence on a number of questions such as:

  • What is the relationship of the mitochondrial donor to a child born using these techniques
  • Would you inform a child born using these techniques
  • What would happen if this treatment was not available in the UK – would you travel abroad for treatment?

No structure has been provided as you are encouraged to give your views on any aspect of these techniques.

Find out more about the Council's call for evidence by visiting the website:

How to respond

By email:

We would prefer it if you could send your response to us electronically. Responses can be sent via email to Johanna White: with ‘Techniques to prevent inherited mitochondrial disorders: ethical issues’ in the subject line.

Please ensure that you also include a completed response form(attached).

By post:

Please send your submission to:

Laura Riley
Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS

For information about obtaining a large print version of this call for evidence, please contact us using the below details.
Telephone: +44 (0)20 7681 9619
Fax: +44 (0)20 7323 6203

Guidance on submitting written evidence:

It will assist the Working Group if you could:

  • Limit your response to one A4 page of no more than 2,000 words in length, preferably submitted by email using a word document.
  • Include a short summary in bullet point form at the beginning of the document
  • Have numbered paragraphs throughout
  • Ensure your submission is accompanied by a completed response form(attached).

The closing date for written evidence is 5pm, Friday 24 February 2012