Mitochondria public consultation 2012

Medical frontiers: debating mitochondria replacement

UK researchers are working on new medical techniques that could allow women to avoid passing on genetically inherited mitochondrial diseases to their children. These techniques, which are IVF-based, offer options for affected families. However they are also at the cutting edge of both science and of ethics.

We launched a public consultation to gather public views on the social and ethical impact of making these techniques available to patients. The consultation ran from September to December 2012.

To learn about the issues and science behind mitochondria replacement you can visit our consultation website.

Consultation findings

The HFEA has now gathered the public’s views on the social and ethical impact of making these techniques available to patients The findings were presented to Authority Members for consideration on 20 March 2013 and proposed advice for Government was agreed. The final paper submitted to government alongside the annexes are below:

About the consultation

Public meeting to discuss mitochondriaThe Secretary of State for Health and the Secretary of State for Business, Innovation and Skills have jointly asked the Human Fertilisation and Embryology Authority (HFEA) to seek public views on emerging techniques designed to prevent mitochondrial disease.

We ran an open and independent consultation which set out to involve the public to explore what people think about the possible use of these techniques in treatment – moving from laboratory research to use in clinics.

Working with Sciencewise and research partners, we began the public dialogue process in summer 2012. This was guided by a group of experts with a range of specialties, which oversaw the process. The consultation took place in several phases, which are explained below.

 

Timings

Our public consultation ran from September to December 2012, as part of a wider programme of engagement. We want to understand the full range of views about new techniques to avoid mitochondrial disease and engaged with the public in a number of different ways

Examining attitudes
In June 2012 we carried out a survey to measure public attitudes about the issues involved. This helped us develop an understanding of the public’s awareness of mitochondrial disease and potential ways to prevent the disease. This survey was managed and run by independent researchers.

In July 2012 held a series of dialogue events where members of the public were invited to participate and share their views. These took place across the UK and will gave members of the public the opportunity to discuss the issues in a bit more depth. These dialogue events were managed and run by independent researchers.

Online public consultation
In September 2012 we launched the Medical frontiers website. The site contains information, videos and background reading on the issues around mitochondrial disease and emerging techniques designed to prevent the disease. People were invited to feed in their views via a survey on this website.  

Public consultation events  
Towards the end of the consultation, in November 2012, we held two discussion events with the public. This was a chance for people to come together to explore the issues and share their views.

Findings
We plan to publish our findings in spring 2013. You can register now, or at any time before then, to receive these and other updates about the engagement programme by emailing us at mitochondria@hfea.gov.uk.

 

Get involved

If you’d like to find out more about what we’re doing, please email us at mitochondria@hfea.gov.uk, with ‘subscribe’ in the subject line.

 


 

Background - Scientific review

In Spring 2011, the Secretary of State for Health asked the HFEA to conduct an inquiry into the current state of scientific understanding of possible methods to avoid mitochondrial disease. The Authority established a small panel, with broad-ranging expertise, to collate and summarise scientific evidence submitted from a wide range of experts in the field. The HFEA submitted a report of the panel’s findings to the Department of Health on 18 April 2011.

In December 2012, the Secretary of State for Health asked the HFEA to provide an updated view of the science to support the assessment of the efficacy and safety of the two mitochondria replacement techniques: pro-nuclear transfer and maternal spindle transfer. The HFEA reconvened the core panel which reported on its updated advice in March 2013. This report will be submitted to the Department of Health alongside the advice regarding the public consultation findings, following discussion at an open Authority meeting on 20 March.

Related information

Independent Oversight Group

An independent Oversight Group has been established to help ensure HFEA’s engagement process is balanced, accessible and far-reaching. The Group is made up of a diverse range of experts who each bring a different perspective to the project.

Read biographies of members and the Terms of Reference of the group

Page last updated: 28 March 2013