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Leading figures express support for mitochondrial donation

29 Jan, 2015
Alison and Niamh, Niamh lost her battle to mitochondrial disease

Alison and Niamh. Niamh lost her battle to mitochondrial disease aged four-and-a-half. Alison is co-founder of The Lily Foundation, a charity representing families suffering from mitochondrial disease.

In a letter to The Times today, leading figures from science and academia express their support for the approval of a legal amendment to allow mitochondrial donation, a technique that could prevent babies being born with debilitating illnesses. Five Nobel laureates (Prof Sir John Sulston, Prof Sir John Gurdon,  Prof Sir John Walker, Prof Sir Tim Hunt and Prof Sir Paul Nurse) are joined by former bishop of Oxford, Lord Harries of Pentregarth,  previous chair of the HFEA (the body that licenses such techniques) Baroness Deech and eminent philosopher and ethicist Baroness Warnock, whose work in the late 1980s created the UK’s internationally-admired regulatory framework for embryology and fertility research and medicine. Wellcome Trust director Dr Jeremy Farrar is also a signatory on the letter, whose publication coincides with this morning’s announcement that this will be debated in the House of Commons on Tuesday 3rd February… 

Having been waiting for a date for a parliamentary discussion and vote on this issue for some time, Jeremy Farrar commented: “Over the past seven years, Britain has been engaged in an exemplary process for evaluating scientific, ethical and public opinion about mitochondrial donation, which has revealed broad support on all three fronts. The Government is right to ask Parliament to support regulations that will allow the law to catch up with public and scientific opinion, and we urge MPs and peers to vote for them.

“Parents who know what it means to care for a sick and suffering child with mitochondrial disease are the people best placed to decide, with proper medical advice and safeguards, whether mitochondrial donation is right for them. It is time to allow them to make that choice.”

The letter was first printed in The Times who also published a supportive editorial on the subject. You can read the full text of the letter and list of signatories below.

Sir, Mitochondrial diseases are devastating inherited conditions causing disability and death, which are passed from mothers to children. They are caused by faulty mitochondria — “batteries” that provide cells with energy — and cannot usually be prevented or cured.

Mitochondrial donation, sometimes known as “three-person IVF”, offers some affected families a chance of having a healthy child, but the law currently prevents clinical use. After seven years of consultation and inquiry that have revealed broad public, scientific and ethical approval, the government has proposed regulations that would allow these families to benefit.

We urge parliament to support these regulations in votes that are expected imminently. A vote in favour will not allow clinics to offer mitochondrial donation immediately: they will still need a licence from the Human Fertilisation and Embryology Authority, which will be granted only with scientific evidence that any risks in each particular case are low. Passing the regulations now will allow this licensing process to begin, so that families do not face further delay.

The question that parliamentarians must consider is not whether they would want to use this technology themselves, but whether there are good grounds to prevent affected families from doing so. We believe that those who know what it is like to care for, and sometimes to lose, an extremely sick child are the people best placed to decide whether this technology is right for them, with medical advice and within the strict regulatory framework proposed. They have been waiting for the science for long enough. They should not have to wait for the law to catch up.

Prof Sir John Sulston
Baroness Deech
Baroness Warnock
Prof Sir John Savill
Prof Sir John Tooke
Dr Jeremy Farrar
Prof Sir John Walker
Ms Aisling Burnand
Ms Liz Curtis
Prof Sir Paul Nurse
The Rt Rev. the Lord Harries of Pentregarth
Prof Jonathan Montgomery
Prof Sir John Gurdon
Prof Sir Tim Hunt
Prof Julian Savulescu
Prof Sir Ian Wilmut
Baroness Cumberlege
Lord Walton of Detchant

One Comment leave one →
  1. Marvin permalink
    3 Feb, 2015 8:35 am

    The ethical approval of manipulating the human genome for the permitting the selfishness gene to be propagated is endangering the stability of society, but for a society that allows the destruction of human lives based on disabilities it is only coherent that they will prevent them to be created in the first place. Why would we accept the risk of being demanded to show selfless love just for having the fun of creating our own baby. We should be creators that do not allow flaws in creation as there are too many in the world as it is. And where would this world go if it would not have our DNA in it.

    BTW, to those who think their DNA is so important to be preserved, if you want to ensure your child shares at least 50% of your genome consider giving them a fecal transplant. At least it might make them genetically more similar :-)

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