The Secretary of State for Health and the Secretary of State for Business, Innovation and Skills asked the Human Fertilisation and Embryology Authority to seek public views on emerging techniques designed to prevent mitochondrial disease.
Such techniques, called mitochondria replacement, may allow women with particular genetic diseases to avoid passing them on to their child. These techniques are only permitted in research at present.
We asked for the public’s views about the possible use of these techniques in treatment, through an open and independent consultation.
The consultation was held between Monday 17 September 2012 and Friday 7 December 2012.
Please note that this consultation has now closed.
Prior to the consultation process, we, the HFEA, set up an expert Panel and consulted world-leading experts in the field. Their role was to review the science, and to determine if it was safe to begin treating patients with new techniques.
The Panel concluded there was no evidence to suggest the techniques are unsafe. As the science is so new, the Panel recommended undertaking further research in human eggs and embryos. This work is currently being undertaken at the Wellcome Trust Centre for Mitochondrial Research at Newcastle University.
During Summer 2012, we held a series of public dialogue events to help us learn what people think about the science and their opinions on the moral and ethical issues that are raised by the new treatments.
Participants were chosen through an independent recruitment organisation to fairly reflect local community. Ninety people participated in events in Newcastle, Cardiff and London.
During Summer 2012, we ran an anonymous randomised survey of 1,000 people to understand how much people knew about mitochondrial disease, the new treatments and their position on some of the moral and ethical issues. The results of this survey will be fed back to the Government.
In September 2012, we launched a consultation on the issues surrounding emerging techniques designed to prevent mitochondrial disease.
In November 2012, we held two discussion events that were open to the public. These offered a chance for people to discuss mitochondria replacement and share their views on issues.
We plan to publish our findings in 2013. You can register to receive updates about the engagement programme by signing up for updates.
We, the HFEA, worked with expert partners to ensure that the dialogue was thorough, well-communicated and balanced.
Sciencewise Expert Resource Centre – the UK’s national centre for public dialogue in policy making involving science and technology issues
Office for Public Management (OPM) – specialist researchers in public engagement and policy making
Forster – a communications agency that specialises in public engagement
An Independent Oversight Group was set up to make sure the consultation was balanced and accessible. The Group was made up of a diverse range of experts who each brought a different perspective to the project and work to the Oversight Group Terms of Reference.