This isn’t about three-parent babies. It’s about saving families needless misery
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Version 0 of 1. MPs have a free vote today on whether to allow mitochondrial replacement – a procedure aimed at preventing children being born with incurable genetic diseases. It raises all the old passions about anything involving embryos – and new worries about interfering with genes. Without warning, the Church of England has thrown a noisy spanner in the works, unexpectedly urging MPs to vote against. Mitochondrial disease is a glitch in the genes that act as batteries, powering the body’s cells. Faulty mitochondria, carried by some 2,500 mothers, can cause catastrophic organ failure in their children, severe epilepsy or conditions such as muscular dystrophy. Children often die in an agony that can’t be alleviated. Some parents have lost several children; I met one couple who have seen six die. Alison Maguire lost her four-year-old daughter Niamh to mitochondrial disease, which prompted her to help set up the Lily Foundation to campaign for this new treatment. “Almost all her life Niamh was in pain,” she said. Suffering from extreme epileptic cramps, her mother says: “She screamed and screamed, and it was awful for everyone to watch her. Then her sight failed too.” A technique that lets mothers with this genetic fault bear healthy children has been in development for years by scientists at the Wellcome Trust Centre for Mitochondrial Disease at Newcastle University. Their method replaces faulty mitochondria in the mother’s egg with healthy mitochondria from a donor egg, to combine with the father’s sperm. Here’s why this doesn’t create a “three-parent baby”: mitochondrial DNA consists of just 37 genes, which perform a quite separate function from the 23,000 genes that determine our characteristics, all of which will still be drawn from its parents. Inevitably it has led to warnings of ‘genetically modified humans', ‘GM babies' and even ‘designer babies' But tampering with any human DNA is illegal, and requires parliament to agree new regulations. Inevitably it has led to warnings of “genetically modified humans”, “GM babies” and even “designer babies”. Some ask whether children should have a right to contact this “third parent”, although the donor contributes nothing to the child’s nature. The good news is that once faulty mitochondria are replaced, children never pass on the disease. But that alarms some: once genes are changed – even mere battery cells – that child’s germ line is altered forever. Is it safe? Nothing can be 100%, but an impressive array of Nobel prizewinners say the research has been as thorough as it can be, with more results to come. Catholic opposition is unsurprising: this means destroying embryos which, they say, “should be respected and protected from the moment of conception”. But the Church of England’s last-minute intervention came as a bombshell. Rev Dr Brendan McCarthy, the church’s national adviser on medical ethics, said: “The Archbishops’ Council, which monitors this issue, does not feel that there has been sufficient scientific study or informed consultation into the ethics, safety and efficacy of mitochondria transfer.” Tony Baldry MP, voice of the Anglicans in the Commons, added: “The Church of England accepts that embryo research is permissible if it’s undertaken to alleviate human suffering. But there are concerns that there has been insufficient scientific study or informed consultation.” All this is disingenuous. The Church of England has no objection “in principle”, it just wants more research and consultation. Delay, they hope, will kick it away for a long time, so the church can paper over the opposing views in its ranks. To call for more public consultation really is a sham. I sat on the Human Fertilisation and Embryology Authority committee that oversaw an unbiased public consultation on this highly complex and emotive issue. To ensure fairness, there were representatives of all groups on our committee. I sat next to a lifelong anti-abortion campaigner; on the other side was a parent representing families with children stricken by mitochondrial disease. Scientists and public polling experts joined the long and detailed process. The Wellcome Trust says there has never been such a “massive and exemplary” public consultation. In 1,000 face to face interviews in 175 locations, the HFEA committee sought views in every way we could How did we do it? Inviting “the public” to write in, we duly received an avalanche of letters from the religious, many pro forma: they were overwhelmingly against. So how do you reach a wider public? We held open consultation meetings in three cities, addressed by pro and con speakers. We held citizens’ juries with participants selected by pollsters to balance class, age, gender and family circumstance. In 1,000 face-to-face interviews across 175 locations, in patient focus groups and opinion polling we sought views every way we could. How the science was explained and how ethical questions were framed was scrutinised by us all to avoid bias. Everyone on this highly diverse committee was satisfied with the method – there were no rows. The result was that 56% of the public were positive about the treatment going ahead, only 10% negative, and 33% unsure. Here’s the surprise: the Bishop of Swindon sat on our committee representing the Church of England throughout this long process, so I am utterly perplexed that he could write in the Observer demanding “more time for consultation and research”. The research, as he knows, has been extensive. As for the consultation, what more would he do? If he thought our extraordinarily thorough process inadequate, he never said so. Does he want to keep consulting until the people give an answer he prefers? As MPs decide today, a strong lobby of the religious will oppose it – the Commons is more religious than the population at large. The evangelical MP Fiona Bruce is said to be collecting signatures for a delaying motion, effectively killing it off. Nervy MPs in marginals may fear the religious vote. And there’s a risk MPs in favour will assume this will sail through: unwhipped, will enough of them stay to vote? All MPs who fear the UK losing its head start in a branch of science where we lead the world should be there. Otherwise, the US will storm ahead: mitochondrial replacement is not illegal there. Above all, MPs should vote to stop needless misery for families afflicted by this rare but terrible disorder. |