Monday 17 September 2012

Mitochondrial myopathy consultation: make your voice heard

The Human Fertilisation and Embryology Authority (HFEA) has launched a consultation on a new IVF technique. The technique was developed by Muscular Dystrophy Campaign-funded researchers, led by Prof. Doug Turnbull and has the potential to stop mitochondrial myopathy being passed from mother to child. A change to the law is required before the technique can enter clinical trials and the consultation will bring together members of the public, policy makers, and scientists to discuss the social and ethical issues raised by the new technique.

September saw the launch of the Human Fertilisation and Embryology Authority (HFEA) consultation on the ethical and social implications of an IVF technique with the potential to stop mitochondrial myopathy being passed from mother to child.To learn more about the consultation, or to take part, please visit the HFEA consultation website.

Researchers funded by the Muscular Dystrophy Campaign and led by Prof. Doug Turnbull at Newcastle University have developed the technique which could wipe out mitochondrial disease in some families. The technique uses IVF to fertilise an affected mother's egg - containing "unhealthy" mitochondria - with the father's sperm. The nucleus of the fertilised egg is then collected and transplanted into a donor egg containing healthy mitochondria, but with its own nucleus removed.

Sometimes sensationalised by misleading and inaccurate headlines as three-parent IVF, more than 99 percent of the child's genes - including all of the 23,000 that determine our physical and personal characteristics - would come from the mother and father. Only a tiny piece of DNA - containing 13 genes which only affect the mitochondria - would be inherited from the donor.

Currently researchers can investigate the techniques in the laboratory using eggs and embryos donated to research. However, scientists are only allowed to keep the embryos alive long enough to check whether the techniques have worked. For these techniques to be brought to clinical trial, a change to the law is required. This would allow scientists to perform the further research required to test if these techniques are safe, and to eventually implant the embryo into a woman's womb in a clinical trial.

Before a change to the law can be discussed in Parliament, the Government has asked the Human Fertilisation and Embryology Authority (HFEA) to consult the public on the use of this new technique. The consultation will bring together members of the public, policy makers, and scientists to discuss the social and ethical issues raised by the new techniques. To learn more about the process, or to take part, please visit the consultation website.

Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign said:

For women who have been dealt the heavy blow of living with mitochondrial disease, the prospect of bearing healthy children is of immeasurable value. We believe that this technique could open up the possibility of motherhood untainted by the fear of passing on a painful, debilitating condition to their future children.

However, open, thorough and transparent dialogue with the public about pro-nuclear IVF is critical. It is only through communicating the reality of this complex procedure - and the issues and questions it presents - that reservations can be dispelled.

The HFEA has expressed its commitment to ensuring the public are presented with the full facts. The Muscular Dystrophy Campaign is confident that this process will serve to broaden support for the technique and aid us in taking it forward with public backing.