Regulator asks public whether to allow 'three parent families'
Consultation launched on IVF technique to help sufferers of rare genetic condition
Jeremy Laurance is a writer on health issues. He is former health editor of The Independent and the i and has covered the specialism for more than 20 years. He thinks the harm medicine does is under-appreciated, the harm it prevents over-rated, and that cycling works better than most drugs. He was named Specialist Journalist of the Year in the 2011 British Press Awards.
Monday 17 September 2012
Accusations of "medical consumerism" and "scientific fetishism" are levelled at the Human Fertilisation and Embryology Authority (HFEA) today as it seeks the views of the public on the controversial technique known as three-parent IVF.
The procedure, currently banned in the UK, is aimed at helping the estimated 6,000 people who are living with the devastating effects of mitochondrial disease – defects in the cell that are inherited but only passed down the maternal line.
But it involves crossing an ethical and scientific boundary because it would alter the human germ line (the genetic contents of the mother's egg) affecting future generations.
Launching a public consultation on the issue, the HFEA said one in 200 births was at risk with 100 babies a year born severely affected by the disease, for which there is no cure.
But it could be avoided if a couple were permitted to use a donor egg from a third "parent" to provide a shell in which to plant their embryo, eliminating the inherited disease from affected families.
The resulting baby would have 99 per cent of its genes from its mother and father and 1 per cent from the donor. About 10 to 20 couples are year are thought likely to be suitable for the treatment.
Appealing for the widest possible response to the consultation, Professor Lisa Jardine, chair of the HFEA, said: "This is very promising for solving the awful problems of mitochondrial disease. But if it is allowed it will affect future generations in perpetuity.
"It will affect the nature of society to all eternity. Everyone in Britain should have a view on this."
A review of the safety of the technique conducted for the HFEA last spring found no cause for alarm but recommended further research because the technique is still new.
Today's consultation, which runs until 7 December, is on the ethics of the procedure and whether the law should be changed to allow it to go ahead, pending its being judged safe enough to be tried in humans.
Professor Jardine said: "This is not about safety – it is about how the world at large feels about this. How might a child born from this feel? What would a couple feel?
"Would there be feelings in the family about the number of people involved in producing the child?"
"The day Louise Brown was born (the first IVF baby in 1978) was uncharted territory. Many thought she would turn out to be a monster. Those uncharted waters are now charted – IVF is now routine.
"Here we are going that mile further – it is a genetic modification of the egg. That is uncharted territory. Once we have genetic modification we have to be damn careful. It is not about us, our children or grandchildren – it's about many generations down the line."
Opposition to the change is expected from religious and pro-life groups.
Josephine Quintavalle of Comment on Reproductive Ethics, which is against the manipulation of embryos, is a member of the HFEA committee overseeing the consultation.
She said: "The HFEA has tried extremely hard to pull the issues together. The challenge now is to sell it to the public – this is about your future, not just the future of disease. There is not just ethical opposition, there are scientific worries about germ line modification ."
David King, director of Human Genetics Alert, said the proposed technique was "unnecessary" and "highly dangerous".
"That it is even being considered is a reflection of medical consumerism and scientists' fetish for employing the most hi-tech methods," he said.
Dr King added “The proposed techniques are both unnecessary, and highly dangerous in the medium term, since they set a precedent for allowing the creation of genetically modified designer babies. Since there is a safe alternative option in these cases, standard egg donation, the minor benefit of satisfying the mother's wish to be genetically related cannot justify the risks that the techniques create for the child or to society.”
The Society for the Protection of Unborn Children rejected the consultation as a "sham".
Details of the consultation and of two public events to be held in London and Manchester are on the HFEA's website at hfea.gov.uk.
A video explaining the research by the Wellcome Trust is at youtube.com/watch?v=Sr7Jnr9qn44
Sharon Benardi lost six children to mitochondrial disease – all of them soon after birth. The only one to survive longer, Edward, lived to the age of 21, despite having severe disabilities and requiring constant care. He died last year. Ms Bernardi, 47, from Sunderland, inherited mitochondrial disease from her mother and, with her husband Neil, has endured repeated tragedy.
"I lost my six babies when they were a few days old, three before Edward was born and three after. The doctors couldn't tell me what was wrong – they all had post mortems but nothing showed up. I would get pregnant again and just pray this time it would be different.
"If three parent IVF had been available, I would have used it. But they didn't know much about it when I was having my babies. I would urge the public to support it. If you don't want something devastating to happen to your child, this should be supported. Anyone could be affected. I don't want people to suffer the tragedy that I have."
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