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Public in favour of allowing mitochondrial replacement, says UK regulator

21 March 2013
Appeared in BioNews 698

Mitochondrial replacement therapy, where a small amount of a mother's genetic material is swapped with material from a donor during IVF to avoid passing on heritable illnesses, enjoys the 'general support' of the public, the UK's fertility regulator says.

Presenting the findings of its public consultation, 'Medical Frontiers: Debating Mitochondria Replacement', Professor Lisa Jardine, chair of the Human Fertilisation and Embryology Authority (HFEA), said: 'The Government has asked us to take the public temperature on this important and emotive issue and that is what we've done. We've found that there is broad support for permitting mitochondria replacement, to give families at risk of mitochondrial disease the chance of having a healthy child'.

Mitochondrial replacement is a term describing two techniques - maternal spindle transfer and pronuclear transfer - which could potentially be used to avoid the transmission of mitochondrial disease. The Government is considering whether to change the law so that these techniques, which are currently only allowed in a research setting, could be used clinically.

The HFEA decided on its advice to government in light of both the consultation findings and the latest evidence regarding the safety and efficacy of the techniques.

The HFEA will advise that any regulation permitting changes to the germline (changes that will be passed on to subsequent generations) should be formulated so as to permit mitochondrial replacement exclusively, 'in order to address concerns that permitting these techniques might open the door to other less desirable ones'.

The regulator will also say that mitochondrial replacement should be permitted only 'to avoid serious mitochondrial diseases in cases where clinical specialists have deemed it to be appropriate'. The HFEA will propose that it licenses mitochondrial replacement on a case-by-case (rather than condition-by-condition or centre-by-centre) basis to begin with, but that it should have the option of changing this regime in future if it so wishes.

The HFEA will advise that donors of mitochondria 'should have a similar status to that of tissue donors', and that people conceived using mitochondrial replacement 'should not have a right to access identifying information about the donor'.

It was thought, however, that people conceived using mitochondrial replacement should be able to access non-identifying information about the donor, and also that donors and people conceived using their donation should be helped to contact and identify one another by 'mutual consent' if this is something both parties desire.

Given that research into both techniques is ongoing, the HFEA will propose that a further scientific review of safety and efficacy should take place if and when the first application is received for a licence to perform mitochondrial replacement.

'We understand that more research is required but believe it is crucial that the government moves now to draft the regulations so that mitochondrial patients in the UK will have access to this treatment', said Professor Doug Turnbull, director of the Wellcome Trust Centre for Mitochondrial Research at Newcastle University.

Britain ponders 'three-person embryos' to combat genetic diseases
The Guardian |  25 March 2013
HFEA agrees advice to Government on the ethics and science of mitochondria replacement
HFEA |  20 March 2013
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The UK Government has announced that regulations around the use of mitochondrial replacement techniques will be presented to Parliament in the next few months...
3 March 2014 - by Patricia Cassidy 
The UK Department of Health has published draft guidelines for the use of new techniques to prevent mothers passing on serious mitochondrial diseases to their children. The guidelines will be the subject of a three-month consultation...
28 October 2013 - by Sandy Starr 
Professor Lisa Jardine has announced that she is due to step down as chair of the UK's fertility and embryo research regulator, the HFEA, in January 2014...
21 October 2013 - by Ruth Saunders 
The health regulator in the USA is considering whether clinical trials of mitochondrial replacement techniques should go ahead....
14 October 2013 - by Dr Rosie Morley 
A group of European parliamentarians has criticised UK proposals to legislate for mitochondrial replacement therapy, calling it 'a eugenic practice'...
3 December 2012 - by Dr Iain Brassington 
Under the law as it stands in the UK, only 'permitted' embryos may be implanted into a woman. Permitted embryos are those that have not been genetically modified, and are not formed from genetically modified gametes...
19 November 2012 - by Sandy Starr 
At the beginning of this year, the Human Fertilisation and Embryology Authority was asked to consult the public on proposed new techniques to avoid the transmission of mitochondrial disease. The resulting public consultation is being conducted in several different ways including two public events, the first of which I attended...
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The energy required for our cells to function properly is mainly produced by mitochondria. Mitochondria are tiny structures within our cells, which contain their own DNA. The mitochondrial DNA (mtDNA) encodes a small number of the many proteins required to produce energy efficiently. Mutations in mtDNA cause a broad spectrum of diseases and degenerative disorders, which can be fatal....
29 October 2012 - by Joseph Jebelli 
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22 October 2012 - by Dr Rebecca Dimond 
Techniques for the prevention of mitochondrial disease have attracted intense speculation, controversy and excitement...
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