AMRC and the Muscular Dystrophy Campaign have submitted a joint response to a call for evidence from the Nuffield Council on Bioethics, who are conducting an enquiry into the ethical implications of emerging techniques to treat mitochondrial disorders. If developed for clinical use, these techniques have the potential to help thousands of couples in the UK who currently risk passing inheritable mitochondrial disorders, such as mitochondrial myopathies, on to their children.
An estimated 6,000 people in the UK have a mitochondrial disease. The Wellcome Trust recently announced funding for research to assess the safety of using mitochondrial transfer techniques in the clinic (covered by Becky here).
These techniques are controversial, because they involve donor eggs and because the child will have a small amount of DNA from a donor as well as the DNA from their parents.
At the moment this research is permitted under UK law, but if these techniques are shown to be safe and effective, it won’t be immediately possible to use them to treat people. The health secretary will need to introduce further regulations, which will have to be agreed by parliament, before they can be offered to affected couples.
The HFEA has announced that it will launch a public consultation to find out what the public thinks about these types of IVF techniques becoming available as treatments.
What did AMRC and Muscular Dystrophy Campaign say in their response?
The supporters of medical research charities want to see the research that they fund being turned into treatments that benefit patients. Our response emphasised that it is important that the concerns of patients and their families, and other public supporters of the research, be considered as decisions are made whether or not to allow these techniques to be used to prevent mitochondrial disorders being passed on.
The Muscular Dystrophy Campaign has invested in research into this area for more than 10 years in hope of finding ways to prevent mitocondrial myopathies, for which there are currently not cures or preventative treatments. If the techniques are shown to be safe and effective, the charity is keen to see them obtain regulatory approval so that they can start to benefit families that currently have to make the difficult decision of either not having children or having children at risk of inheriting the disorder.
You can read the full response here.
The Council will draw together all the responses that they receive in a short report which will be published in spring/summer 2012.
The HFEA, working with Sciencewise, will begin their public dialogue later this year, guided by a group of experts who will oversee the process. Anyone wanting to participate can register here. This will inform the government as it decides how to move forward with any regulatory changes it may wish to make. If proposals for new regulations are put before parliament, the Nuffield report, along with the HFEA consultation and other sources, will inform MPs and Peers as they debate the changes.