The Wellcome Trust have just announced that they are funding a team of scientists in Newcastle to do some research into techniques to help people carrying mitochondrial diseases avoid passing them on to their children.
This research is a little controversial because it involves donor eggs and the child will have a little bit of DNA from a donor as well as the DNA from their parents.
At the moment UK law allows research into these techniques to go ahead. But if the research is successful and scientists are able to safely and effectively help affected couples have children that are free from mitochondrial disease, further regulations will need to be introduced and agreed by parliament before the technique can be rolled out to help all couples who might need it.
This area of research is highly regulated. The HFEA have also launched today a public consultation to find out what our views are on this research and whether we, as a country, would like this treatment to be available to couples who need it if the research is successful.
Some genetic conditions are passed on by DNA in mitochondria. Mutations in this DNA can stop the mitochondria working properly, leading to people suffering disabling and potentially fatal symptoms including blindness, organ failure, muscular weakness, learning disability and diabetes. Research is ongoing to find methods to avoid these unhealthy mitochondria being passed on from the mother to the child. A few different techniques are being explored. Some of this research involves transferring the nucleus from a fertilised egg with unhealthy mitochondria into a donor egg with healthy mitochondria. This means that the child will have a little bit of DNA from a donor (the DNA in the donor’s healthy mitochondria) as well as the DNA from their parents. This has hit the news before with the rather scary sounding headline, “three parent IVF”.
Current legislation allows research into this procedure. When this legislation was revised in 2008 (the Human Fertilisation and Embryology Act 2008) Parliament recognized the potential of this research and put in place regulation-making powers so at a future date, regulations could be made to license this research for clinical practice, i.e. to treat people.
Work has been continuing into a number of different techniques to achieve this since this was debated in 2008 and the research is now nearing a stage where treatments could be developed.
In March 2011, recognising this progress, Andrew Lansley asked the HFEA to review the current research, informing him on the safety and effectiveness of these methods. They looked solely at the science, not the ethics surrounding this technique and they reported in April calling for additional experiments to be undertaken to further demonstrate the safety of these techniques.
At the same time, AMRC signed a joint letter to Andrew Lansley making the case for work to begin developing regulations so that, should the research be successful, couples could benefit from the new treatment as soon as possible. We were particularly concerned that, without the possibility of the technique being used to help patients once it was developed, there was not much incentive to fund the research into this technique.
What has happened today?
The Wellcome Trust have announced a grant to a team of scientists at Newcastle University to continue research into this technique to help people carrying mitochondrial diseases to avoid passing them on to their children.
The HFEA, at the request of the Department of Health and the Department of Business Innovation and Skills, have launched a public dialogue HFEA consultation on mitochondrial transfer in which they will ask us what we think about this technique and whether we would be happy for this therapy to be available in the UK. Unlike the HFEA’s 2011 review which focused on the science, this consultation is looking at the ethics of these techniques and what we, the public, think of them.
This is the first step in the government deciding whether to develop regulations to allow this technique to be used to help affected couples have healthy children and what these regulations might look like.
Check out ‘Three parent IVF’ technique moves closer on the BBC
Lots of detail on the Wellcome Trust blog A good concept: The science of mitochondrial DNA
and there’s an interesting comment piece in the Telegraph Concerns over the ‘third parent’ research are understandable, but unfounded
What does this mean for medical research charities?
Mitochondrial disorders underlie a range of conditions for which medical research charities are focused on developing new treatments. If these techniques can be developed safely and effectively, they offer the potential to stop conditions such as muscle disease caused by mitochondrial myopathies being passed on and help lots of people. The Muscular Dystrophy Campaign has been funding some research at Newcastle University into these procedures – worth checking out their website here which gives more detail about the current research and how it works.
Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities (AMRC) has welcomed today’s announcements:
“Right now there are no cures for mitochondrial diseases and no way of helping people avoid passing them on to their children. Research in this area is much needed and AMRC are delighted that the team in Newcastle have funding. If their research is successful, it will be vital the health secretary moves quickly to ensure these techniques can be licensed and are available to patients. It is also essential that we all have confidence in the legal and ethical framework around these therapies, and we welcome the Department of Health’s public dialogue as an important step in this process.”
The research will get underway in Newcastle and the HFEA’s consultation finding out what we think about this technique will get underway – this likely to complete by the end of the year.
The Nuffield Council on Bioethics is also looking at this area at the moment – they are calling for evidence by 24 February 2012.
This will all inform the government as they decide whether to introduce regulations to allow this technique to be used to help affected couples have healthy children and what these regulations might look like.
If they choose to introduce regulations, these will need to be discussed by parliament before they can come into force.