Public in favour of allowing mitochondrial replacement, says UK regulator
Sandy Starr,
26 March 2013

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 germline genetic modification (where any alterations would 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.





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