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Mitochondrial DNA donors granted anonymity in draft legislation

12 January 2015
Appeared in BioNews 785

Regulations to legalise and govern the use of mitochondrial donation techniques have been laid down before the UK Parliament.

Mitochondrial donation techniques are being developed by researchers at Newcastle University and elsewhere as a means to prevent the transmission of mitochondrial disease. The techniques involve removing the nuclear material from an affected egg and inserting it into a healthy donor egg. The donor egg only contributes healthy mitochondria as its nuclear material has been removed.

Children born from mitochondrial donation will inherit nuclear DNA from both parents, but will also have a small genetic contribution from the donor since the mitochondria carry their own mitochondrial DNA (mtDNA).

Fertility clinics are not yet able to offer mitochondrial donation procedures under the current law. However, public health minister Jane Ellison says that 'the Government considers that the time is now right to give Parliament the opportunity to consider and vote on these regulations'.

A debate and vote on the draft regulations is expected to take place before the general election in May 2015. If the regulations are approved, the new law will come into effect in October 2015 and would make the UK the first country in the world to legislate for mitochondrial donation.

Since its first announcement, mitochondrial donation has received criticism from some saying it is unethical (see BioNews 439970" title="<span lang="EN-US">439970</span>" target="_blank" class="">764 and 442199" title="<span lang="EN-US">442199</span>" target="_blank" class="">765). However, the move to legislate for mitochondrial donation has support from many scientists and charities.

The Chief Medical Officer, Professor Dame Sally Davies, said: 'Mitochondrial donation will give women who carry severe mitochondrial disease the opportunity to have children without passing on devastating genetic disorders. It will also keep the UK at the forefront of scientific development in this area.'

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, added: 'Today's news is an important milestone for families affected by mitochondrial disease. We believe that this technique could open up the possibility of motherhood untainted by the fear of passing on a painful, debilitating condition to their future children.'

The draft regulations state that fertility clinics will require a new licence to offer the techniques. They also state that it will be up to the Human Fertilisation and Embryology Authority to decide whether a treatment can go ahead on a case-by-case basis. Under the proposed regulations, children born from mitochondrial donation will have no right to identifying information about the mitochondrial donor.

This contrasts with rules that allow children born from egg, sperm and embryo donation to access identifying information on donors when they turn 18. Although mtDNA only contributes a small percentage of a child's genetic material, some critics are concerned about the impact of children not knowing who their mitochondrial donor is.

Philippa Taylor, of the Christian Medical Fellowship, told the Daily Mail, 'A child must have the right to identify and know who his or her three genetic parents are, if they choose.'

'This is already granted to children who are adopted because we understand how important it is for children to know about their genetic heritage for their sense of identity and self-understanding. It should not be denied to these children,' she added.

Despite these concerns Professor Doug Turnbull from Newcastle University, one of the pioneers of mitochondrial donation, told BBC News: 'I'm delighted that it's being moved forward to the next stage. It's a long process but it's great news.'

'We want to apply for a licence next year and hope to do it [the procedure] in 2015.'

Rules for babies 'from three people'
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Third parent in IVF cases will not be named: Britain to allow triple-donor embryos to halt genetic diseases in world first - but extra mother's identity will be kept secret
MailOnline |  18 December 2014
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World’s first ‘three-parent’ babies could be born in the UK
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5 June 2017 - by Rikita Patel 
A donor-conceived Dutch woman, Emi Stikkelman, is the first to find her sperm donor using an American commercial DNA bank...
9 February 2015 - by Dr Rachel Montgomery 
Held at the Houses of Parliament, and organised by the Progress Educational Trust (the charity that publishes BioNews), this public debate was well attended. With all the chairs taken and many more people standing, people clearly felt it was important to discuss these issues...
2 February 2015 - by Rebecca Carr 
A group of researchers, including five Nobel laureates, has urged the UK's Parliament to legislate for mitochondrial donation...
2 February 2015 - by Dr Iain Brassington 
It seems to have happened very quickly: it was only in 2012 that the public consultation process about allowing mitochondrial donation to be used on humans was underway; and now – if you'll allow the pun – the first child to have benefitted from them could be conceivable in the next few months...
8 September 2014 - by Sandy Starr 
A group of backbench MPs, led by Conservative MP Fiona Bruce, has sought to delay the laying before Parliament of regulations permitting the use of mitochondrial replacement techniques...
4 August 2014 - by Siobhan Chan 
The UK Government has been accused of deliberately misleading the public in order to win approval over its plans to implement mitochondrial replacement techniques in IVF...
28 July 2014 - by Dr Rachel Montgomery 
The UK Government has announced that regulations around the use of mitochondrial replacement techniques will be presented to Parliament in the next few months...
9 June 2014 - by Alice Plein 
Two experimental IVF techniques that could prevent certain types of incurable genetic disease are 'not unsafe', a report from the UK's Human Fertilisation and Embryology Authority has found....
Comment ( - 04/01/2020)
I am sure this is really revolutionary, great new technique in the ART field! And this technique will help thousands patients, women who thought their diagnose to be hopeless. And now they can successfully fight with infertility even having certain genetic troubles. I support such innovations in the medicine and I always welcome such new ways of treatment. And as of donor confidentiality I think yes it is very right decision to leave them secret. It’s the same as eggs donor confidentiality and they have the right for anonymity. As we know very often infertile patient uses donor eggs in order to conceive child. And they don’t see and know each other usually but there are of course exceptions. It’s not in all cases but usually donor eggs procedure takes place just in such way. I think it is right way and I know for example I would not want to know who was the donor. Because in fact in real life it can be difficult psychologically in some way. And one day donor can decide to fund baby born with the help of her eggs or mitochondria for example! Thus it can be problems and I guess patients who use donor cells don’t want such situations) And this method can be great treatment for women who have gone through numerous failed IVF attempts. So, time will show new opportunities of using mitochondrial donation.
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