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IVF rule change could allow 'three parent' babies

Draft rules allowing the introduction of new treatments that could see the creation of babies with three genetic parents have been announced by the government.

The regulations could come into force by the end of this year following a period of public consultation.

Ministers have agreed to amend fertility law in order to prevent a range of inherited diseases caused by faulty mitochondria, tiny energy-generating powerhouses in cells that have their own DNA.

Under the new rules, IVF (In-Vitro Fertilisation) clinics will be able to replace a baby’s defective mitochondrial DNA with healthy DNA from a female donor’s egg.

Controversially, it would result in babies having DNA from two parents plus a tiny amount of extra DNA from a second “mother”.

While many doctors and scientists applaud the move, pointing out that it could eliminate terrible diseases, critics argue “mitochondrial transfer” could be a slippery slope leading to designer babies.

“This will be the first time any government has legalised inheritable human genome modification”

David King

Dr David King, director of the pressure group Human Genetics Alert, said: “If passed, this will be the first time any government has legalised inheritable human genome modification, something that is banned in all other European countries. The techniques have not passed the necessary safety tests so it is unnecessary and premature to rush ahead with legalisation.

He added: “The techniques are unethical according to basic medical ethics, since their only advantage over standard and safe egg donation is that the mother is genetically related to her child. This cannot justify the unknown risks to the child or the social consequences of allowing human genome modification.”

But Dr King’s was a lone voice among those of leading experts who lined up to welcome the move.

“I am pleased that the government has been brave enough to follow through on their promises”

Peter Braude

Professor Peter Braude, head of obstetrics and gynaecology at King’s College London, said: “I am pleased that the government has been brave enough to follow through on their promises given during the 2008 revision of the Human Fertilisation and Embryology Act, to bring before Parliament an option to help a small but deserving portion of society blighted with the spectre of transmitting mitochondrial disease to their children.

Professor Peter Braude

Professor Peter Braude

“Although rare, the effects of mitochondrial disease are devastating on those families, and the technology proposed will bring hope to those carrying the disorders.

“It is true that genetic alteration of disease risk is an important step for society and should not be taken lightly. However the proposed changes to the regulations ensure it will be limited to informed couples, who understand from sad personal experience the significant effects of their disease, and are best placed to balance the risks of the technology with the possibility of having children without mitochondrial disease.”

Dr Jeremy Farrar, director of the Wellcome Trust, Britain’s biggest research charity, said: “It is now almost a year since a major public consultation found broad support for the use of new IVF techniques for preventing mitochondrial diseases, so we are pleased that the government has now published draft regulations that would permit this.

Dr Jeremy Farrar

Dr Jeremy Farrar

“Once further public consultation on the detail of these regulations is complete, we urge the government to move swiftly so that Parliament can debate the regulations at the earliest opportunity and families affected by these devastating disorders can begin to benefit.”

Doug Turnbull, professor of neurology at the University of Newcastle, said: “I am delighted that the government has published the draft regulations. This is very good news for patients with mitochondrial DNA disease and an important step in the prevention of transmission of serious mitochondrial disease”

Around one in every 6,500 babies born in the UK has a severe mitochondrial disease. Although rare, the disorders can be passed to future generations through the maternal line.

Examples of mitochondrial diseases include conditions that cause muscle wasting, nerve damage, loss of sight and heart failure.

“We now call on the government to ensure that regulations are passed”

Robert Meadowcroft

Robert Meadowcroft, chief executive of the Muscular Dystrophy Campaign, said: “News that the wait for proposed amendments to genetic research regulations to be shared with the public is over will be welcomed by many families living with mitochondrial disease.

Robert Meadowcroft

Robert Meadowcroft

“We have supported the Government’s review of the mitochondrial transfer IVF technique throughout, in the firm belief that open, thorough and transparent dialogue is critical. However, it will soon be two years since the initial consultation with the public was announced and three since the review began.

“There have been lengthy waits at every stage, and we now call on the government to ensure that regulations are passed before the next general election, so that the technique can be moved towards clinical trials as soon as possible.”

He added: “Encouragingly, we have seen that, when given in-depth information, the majority of people in the UK are broadly supportive of this technology. We now need to see a prompt, efficient discussion with the public on the rules that will govern how it is taken forward.”

The new consultation is not to debate whether mitochondrial transfer should be allowed, but how it should be implemented.

Once the rules are brought in, it will be up to the fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), to decide whether a treatment can go ahead on a case-by-case basis.

Mitochondrial transfer will only be allowed when there is a “significant risk” of disability or serious illness.

Children born after mitochondrial transfer will not be entitled to discover the identity of the “third parent” donor.

The consultation documents can be viewed online. The consultation runs for 12 weeks and closes on 21 May.

 

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Readers' comments (22)

  • michael stone

    If this happens, it might provide the answer to something I've wondered about.

    I've pondered, whether if you don't fall prey to accident or an infectious disease, or some serious disease 'in particular', whether 'death from 'just growing too old and worn-out' might be directly related to your mitochindria - this would [eventually] shed some light on that pondering.

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  • michael stone | 28-Feb-2014 2:33

    perhaps you could explain what you are talking about!

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  • I'm sorry, but I do not agree with this particular manipulation of 'mother nature'. The consequences could be something we later regret.

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  • michael stone

    Anonymous | 1-Mar-2014 8:21 am

    Mitochondria, are effectively 'the body's batteries' - they provide the 'chemical fuel' yuor body uses. So if mitochondria 'wear out at different rates' in different people (because of small differences between mitochondria), and if you can 'eventually die because you have ran out of energy, your mitochondria having become ineffective', then that would kill you 'despite being otherwise healthy'.

    I wondered this, because it seems to me that siblings often seem to 'die of old age' at very similar ages - but siblings have got a lot of differences for the normal DNA, getting 50% from each parent at random.

    All siblings, however, would have (unless I've got this wrong) identical mitochondria, because they come from your mother's eggs. So if this happens, people with very different 'normal DNA' could have identical mitochondria - if they also 'tended to die of old age at very similar ages', then that would point to the shared mitochondria as controlling that.

    This is only 'back-of-an-envelope wondering' - it isn't something I've really looked into (and if mitochondria do differ between maternal siblings, I'm wrong from the off - the argument is based on that assumption).

    I think I first wondered about this, when I realised that the brothers and sisters of my mum's stepfather, all seemed to die in their late 80s and 90s.

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  • michael stone | 1-Mar-2014 2:26 pm

    Anonymous | 1-Mar-2014 8:21 am

    sigh, yes michael, thanks we all know what mitrochondria are. Nurses do study, don't forget.

    re 3 parent families

    I already had enough trying to cope with two, wonderful though they were, two was quite enough - one of each sex!

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  • Linda | 1-Mar-2014 12:51 pm

    totally agree and especially if the tax payer is expected to foot the bill to the cost of the elderly or others already living needing more vital health care.

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  • tinkerbell

    I was thinking don't we also inherit our grandparents genes and got this off the internet. Sorry I lost the link but you will get the gist of it.

    'On average we inherit 25% from each grandparent, but in reality it can vary anywhere from 0%-50%.
    To understand how this is possible, use the analogy of coin tossing. Think for a minute of coin tossing -
    If a coin is tossed 50 times, the mathematical average result would be 25 heads and 25 tails. However, in reality the number of heads and tails varies. The more times you throw the coin, the closer you get to a 50:50 average, but the smaller the number of coin tosses, then the greater the variability of results.
    In Mathematical probability theory there is something called a "normal curve", and according to this in about 90% of cases the probability of getting a head rather than a tail (or vice versa) ranges from approximately 40-60% '

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  • michael stone

    Anonymous | 1-Mar-2014 3:39 pm

    I was answering a question asked of me - I never implied that nurses don't know what mitochondria are.

    That's the point, Tink - except for mitochondria, our genetics varies a lot even between siblings. I think you lost the plot with your normal curve stuff when you started applying it to an unbiased coin toss - it is 50/50 for each toss, and normal curves don't come into that.

    Then there is epigenitics as well, of course (this is drifting somewhat off the usual discussion re this topic, which is normally about 'the morality and ethics of it').

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  • I dislike this eugenistic approach to procreation and feel that is should fall outside of the NHS umbrella.

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  • michael stone | 2-Mar-2014 12:38 pm

    Anonymous | 1-Mar-2014 3:39 pm

    I asked the quesiton. what a dry old stick you appear at times.

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  • michael stone

    Anonymous | 2-Mar-2014 6:09 pm

    I am 'a dry old stick' - I'm very analytical, and not very 'empathic'.

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  • michael stone | 3-Mar-2014 10:35 am

    perhaps you are on the wrong site?

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  • michael stone

    Anonymous | 3-Mar-2014 11:54 am

    My analysis says not - I'm interested in figuring out 'how nurses think', so this looks like the (or a) right site ?

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  • michael stone | 3-Mar-2014 1:13 pm

    Adding my tuppence worth: you come across as extremely self absorbed and if I'm honest, I'm not really interested in who you've emailed or the contents of these emails. Actually, I tend not to even bother reading what you've written as it's usually complete and utter nonsense. Me, me, me, me.

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  • Anonymous | 3-Mar-2014 4:40 pm

    from Anonymous | 3-Mar-2014 11:54 am

    Am currently enjoying Peter Ackroyd's biography of Chaucer and the latter's expression comes to mind:

    'domb as any stoon'

    Don't think any translation is needed!

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  • michael stone

    I'm not sure about 'self-absorbed' - I do bang on endlessly about the issue that concerns me, which is not, I think, the same thing (that issue is very unlikely to ever affect me personally again - so I doubt it could count as 'self absorbed').

    The e-mail you chose to comment on, introduces a paradox: all I said in there, was that I am interested in 'how nurses think' - surely if I were indeed 'self absorbed', I would only be interested in how I think ?

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  • michael stone | 4-Mar-2014 1:39 pm

    we once had a medical student on our ward, who unlike the others, who took five years to qualify was in year seven. he was aspiring to be a psychiatrist and had no notion, and absolutely no interest (self confession) in any of the practical work required for the makings of a doctor and passing his clinical exams or building staff or patient interpersonal or therapeutic relationships. How he had got as far as he did I will never know or understand. Anyway his main hobby was trying to get inside the minds of nurses and see how they thought (another quirky self confession). As a result his only activity on the ward, apart from messing up any practical tasks assigned to him, was on the ward rounds to stare hard at each nurse with his eyes wandering from one face to another and fixing on us whenever we spoke. Same during our coffee breaks which made many of us feel very uncomfortable.

    One day I challenged him as he failed to react or call a nurse when a patient's Venflon came out until he had finished taking a full case history some time later when the whole bed was saturated with blood. I was summoned as he assumed a very busy nurse would clean up the mess but instead to his surprise I asked him what he thought he ought to do about it, firstly and most urgently to stem the profuse bleeding at which, once he had managed after being shown to select the appropriate material from the dressings cupboard I had led him to, he proceeded to vigorously rub the puncture site. Fortunately I was there, as I knew he could not be left on his own, to give a demonstration on how to stop a by then haemorrhage by applying pressure, and then sending him away before he could do any further damage and create even more work and guess who had to clean up the patient with the rest of the congealed blood in the bed and on the floor and change the sheets? all of which could have been avoided if he was more engaged with the tasks in hand rather than trying to examine what went on in the minds of nurses.

    Perhaps you should reflect on what is of interest and of possible help to others using this site and reading your comments rather than just using the site to your own dubious ends. Now, please run along and engage in some other useful activity and leave nurses to their discussions on this thread and stop wasting everybody's time! Many thanks.

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  • michael stone

    Anonymous | 4-Mar-2014 2:22 pm

    'Anyway his main hobby was trying to get inside the minds of nurses and see how they thought'

    An odd hobby - I am not interested in understanding 'how nurses gain their beliefs' (which, really, is what my own 'how they think' comes down to, along with 'and what they believe is correct') as part of a HOBBY. I need to figure that out, to better present things in an [ongoing] DISCUSSION.

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  • michael stone | 5-Mar-2014 12:25 pm

    your sole purpose seems to irritate and annoy instead of taking part in any meaningful discussion. It is a waste of time reading these pages and trying to discuss them with your constant trolling of these threads - nearly every page!

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  • michael stone

    Anonymous | 5-Mar-2014 7:41 pm

    I'm not sure you are properly reading my posts - I am pretty sure, you wouldn't be happy whatever I wrote in a post, however.

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