A CONTROVERSIAL fertility treatment developed in UK's North East which could eradicate incurable inherited diseases has the public's backing, it has been revealed. Fertility regulators yesterday paved the way for the Government to legalise the creation of IVF babies with three genetic parents.
A team of researchers at Newcastle University, leading on the development of the technique in humans, aims to prevent the transmission of maternally inherited mitochondrial disorders. After a six-month public consultation, the Human Fertility and Embryology Authority (HFEA) announced its findings which showed broad support for mitochondria replacement being made available to families at risk of passing on a serious mitochondrial disease.
In advice to ministers, the HFEA set out safeguards for mitochondrial replacement techniques that could affect future generations. But it did not explicitly argue for a change of the law that would allow children to be conceived with the help of DNA donated by a second “mother”. Instead, it was left to ministers to decide whether they should ask Parliament to agree to the procedures.
However, the public’s support overcomes a key hurdle in the path of changing the law to allow mitochondrial replacement as 56% of those questioned said they were “very” or “fairly” positive about techniques which could prevent mitochondrial disease by altering genetic make-up during IVF.
Meanwhile, critics insist that it is the start of a slippery slope towards “designer” babies and eugenics Prof Doug Turnbull, director of the Wellcome Trust Centre for Mitochondrial Research at Newcastle University said: “Mitochondrial DNA disease runs in families and there is no cure. The techniques we are working on could help hundreds of women have healthy children.
“We are very grateful for the detailed public engagement exercise carried out by the HFEA and welcome the supportive views of most of the public.
“We understand that more research is required but believe it is crucial that the Government moves now to draft the regulations so that mitochondrial patients in the UK will have access to this treatment.”
The groundbreaking fertility treatment involves taking the nucleus of an embryo from a mother with defective DNA and putting it into the egg of a woman with healthy DNA. This healthy egg is then implanted into the first woman, allowing them to create a baby free of genetic disease. A child produced this way would have DNA from two women and a man. The nuclear DNA, which influences characteristics such as sex, height and eye colour, would come from the mother and father. Only 0.05% of DNA is from the female donor.
Defects in mitochondrial DNA give rise to a range of potentially life-threatening diseases, including a form of muscular dystrophy and conditions leading to the loss of hearing and vision, heart problems and bowel disorders.
Sharon and Neil Bernardi, of Springwell, Sunderland, have lost all seven children to mitochondrial disease, the majority dying within just a few hours of being born. Their son Edward, who suffered from Leigh’s disease, became the oldest person in the world to survive the life-limiting condition before he died two years ago at the age of 21.
Mrs Bernardi has a heart defect and mobility problems caused by an inherited mitochondrial disorder. The 47-year-old said: “I am very pleased at the findings of the HFEA, as it’s nice to see that the fertility treatment has the public’s backing. The treatment is about giving people affected by mitochondrial disease the chance to have a family if they want to.
“The disease has a devastating impact on families and no-one can imagine how difficult it is, as you never get over the death of a child. “The fertility treatment is a great option and a good step forward to helping those affected by the disease.”
In its advice, the HFEA said clinics wishing to offer mitochondrial replacement should be specifically licensed. It also insisted that the Authority should approve each use of the procedures, at least initially. Children should not have an automatic right to know the identify of mitochondrial donors, although this could occur by mutual consent, said the HFEA.
It also called for a further safety assessment once a clinic had applied to carry out one of the techniques. This followed advice from scientists that more research was needed despite there being no evidence that mitochondrial replacement is unsafe.
Prof Lisa Jardine, chair of the HFEA, said: “The Government has asked us to take the public temperature on this important and emotive issue and that is what we’ve done. We’ve found that there is broad support for permitting mitochondria replacement, to give families at risk of mitochondrial disease the chance of having a healthy child.”
Mitochondrial replacement is banned because under the present law any tampering with inherited genetic material in clinics is illegal. A window has deliberately been left in the Human Fertilisation and Embryology Act, allowing this blanket rule to be changed by Parliament in exceptional circumstances.
Dr David King, director of the pressure group Human Genetics Alert, opposes the move. He said: “These techniques go far beyond anything existing in both invasiveness to the embryo and complexity so it’s not surprising that they pose serious health risks to the child, risks that the HFEA refuses to properly address.”
Article: 21st March 2013 www.journallive.co.uk