Tuesday 24 January 2012
Government to seek public views on allowing prevention of mitochondrial diseases
The Government has asked the Human Fertilisation and Embryology Authority (HFEA) to seek public views on a type of IVF designed to prevent mitochondrial diseases being passed from mother to child. These techniques have proven successful in the laboratory but in order for it to be brought into clinical practice a change in the law will be required.
Contents:
- What will the consultation involve?
- How can you participate and give your view?
- About the techniques
- Further information and links
What will the consultation involve?
The HFEA's public dialogue will explore what people think about the possible use of these techniques in the clinic for families affected by mitochondrial disease. Please read more detail about the techniques below.
The HFEA will work with Sciencewise, the UK's national centre for public dialogue in policy making involving science and technology issues. They will bring together members of the public, policy makers and scientists to discuss and come to conclusions on the social and ethical issues raised by this new technique. An important aspect of the consultation will be to communicate the complicated science involved to the public and raise awareness of its implications. The dialogue will be in several phases beginning with the preparation phase starting now.
The public dialogue will start later this year, guided by a group of experts which will oversee the process. The Muscular Dystrophy Campaign is in contact with the HFEA and will participate in the planning of the consultation to ensure that the patient voice is represented.
Professor Lisa Jardine, Chair of the HFEA, said:
This is an issue of great importance to families affected by mitochondria disease and it is also one of enormous public interest. The decision about whether this research technique should be made available to treat patients is one for the Secretary of State and, ultimately, Parliament. We will work hard to stimulate a rich and varied public debate, to help him make an informed decision.
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign said:
This technology, a form of IVF, has been shown to work in the lab. Now we must explore it further and move it into clinical trials without delay. We are confident that the consultation will help the public understand the urgent need for the development of this treatment for our families. There must be a consensus to give people the chance to have healthy children.
How can you participate and give your view?
A full timeline of consultation events will be announced in early Spring 2012.
In the meantime, you can register your interest in the consultation by sending an email to mitochondria@hfea.gov.uk with ‘subscribe' in the subject line. The HFEA will send you regular updates, news and information on how you can get involved.
About the techniques
Research funded by the Muscular Dystrophy Campaign and led by Professor Doug Turnbull in Newcastle (in collaboration with Dr Mary Herbert and Professor Alison Murdoch) has developed a technique which involves IVF to prevent mitochondrial diseases being passed from mother to child. It is estimated that 3,500 people in the UK have mitochondrial myopathies, a group of mitochondrial diseases which, in the most severe cases, can cause debilitating and life threatening muscle weakness. There is currently no treatment for mitochondrial disease.
Mitochondrial diseases are caused by problems with the mitochondria - the batteries that power the cells in our bodies. There are many mitochondria in every cell of our body (except red blood cells). Mitochondria have their own small piece of DNA, which is separate from the vast majority of our DNA which is bundled into chromosomes and located in the centre of the cell (the nucleus). If the DNA in the mitochondria is damaged this can result in mitochondrial disease. Mitochondrial DNA is inherited only through the mother who may pass the disease on to her children.
The proposed procedure would use IVF to fertilise the egg of a woman affected by mitochondrial disease with her partner's sperm. The genetic material of the fertilised egg that determines the characteristics of the potential child (the chromosomes) would then be transferred to an egg donated by a woman who has healthy mitochondria. The donor egg would first have its own chromosomes removed.
The research team in Newcastle has also been working on a closely related technique which involves transferring genetic material between two eggs. In this case, genetic material from the egg of the mother seeking treatment would be transferred into an egg from a donor (after removing its chromosomes). This egg would then be fertilised with the father's sperm before being implanted into the mother's womb.
It has been shown in the laboratory that these techniques are effective in replacing the faulty mitochondria, or ‘batteries'. More than 99.9 percent of the genetic make-up of the resultant embryo would come from the parents and these 23,000 genes are the ones that determine our personal characteristics. A tiny piece of DNA (13 genes that contain the instructions for proteins) would be inherited from the donor's mitochondria and these genes only affect how the batteries (mitochondria) work.
More research is required before these techniques are considered for introduction into clinical practice, and it was recently announced that a new £5.8 million research centre is to be set up in Newcastle to continue this research. This will involve testing the technique on more eggs to gather further information on the efficiency and safety of the technique.
This research currently relies on an egg-sharing scheme where women undergoing IVF can receive £1500 reduction in their treatment costs if they donate half their eggs for research - using their remaining eggs for their own IVF. As a result of this scheme over 500 eggs have been used for this research. But for this research to move forward more eggs are needed. Now, new permissions have been granted so that women can donate eggs altruistically and receive £500 compensation for their time. Find out more about this egg donation here.
Under the current law, researchers are allowed to investigate this technique in the laboratory using donated eggs but they are only allowed to keep the embryos alive for up to 14 days and then they must be destroyed. For this technique to be brought into clinical practice, a change in the law would be required which allows the resulting embryo to be placed into the mother's womb.
Watch a video explaining this research.
Further information and links
Read more about the research into this type of IVF.
More information about mitochondrial myopathy.
Read one woman's account of living with mitochondrial myopathy.
Read about the mitochondrial myopathy research we currently fund.
If you have any questions about this or any other research please contact us -
email: research@muscular-dystrophy.org
phone: 020 7803 4813.
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