Sciencewise funded project 2012
Mutations in mitochondrial DNA can give rise to many diseases, the severity of which is dictated by the proportion of healthy and unhealthy mitochondria within a person’s cells. Symptoms can include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
Aims and Objectives
The aim of the engagement process is to assist HFEA in understanding:
• The ethical issues entailed in licensing techniques to avoid mitochondrial disease;
• How people comprehend ethical issues involved in techniques to avoid mitochondrial disease;
• The deliberative process people go through to form views on techniques to avoid mitochondrial disease;
• The difference between informed and uninformed views on techniques to avoid mitochondrial disease;
• Interested stakeholders’ arguments for and against techniques to avoid mitochondrial disease;
The dialogue findings were fed directly into HFEA advice on the public view, which contributed to Government considerations on whether to change the law to allow clinical practice of mitochondria replacement.
The HFEA advice specifically identified a series of safeguards that reflected the three conditions identified in the results from the public dialogue and drew extensively on all the results from the consultation. The finalised public dialogue and scientific update reports were sent to Government on 28 March 2013.
The HFEA undertook an internal lessons learned exercise, building from the formal wash-up meeting convened by Sciencewise, to explore and embed learning from the experience. The dialogue provided the HFEA with a rich source of learning in best practice in public engagement.
- Mitochondria paper – Annex II – Public deliberative workshops
- Mitochondria paper – Annex I – Summary of evidence
- Mitochondria paper – Annex III – Public representative survey
- Mitochondria paper – Annex IV – Questionnaire report
- Mitochondria paper – Annex V – Open consultation meetings
- Mitochondria paper – Annex VI – Patient focus groups
- Mitochondria replacement case study
- Mitochondria replacement evaluation report
“Over the past two years, the HFEA has carried out a consultation process with clinicians, scientists and the public in order to advise the present Government on whether this technique (mitochondrial replacement), which up until now has only been allowed in a research laboratory, should be introduced into clinical practice.”
“Perhaps surprisingly, the public supported the new technique if it could prevent serious illness. They had little objection to its being approved for clinical use as long as it was scrupulously overseen by an appropriate regulatory body.”Professor Lisa Jardine, HFEA Chair - BBC Radio 4 A Point of View 25 Oct 13
“As ever, the balance has to be struck between the likely risk and the benefit to those affected. Overall, the public was in favour. When randomly selected people looked at the evidence they didn’t think this a slippery slope to ‘designer babies’ or that it amounted to ‘three-parent IVF’, as there is no genetic effect on identity. ”Polly Toynbee, Project Oversight Group member
Human Fertilisation and Embryology Authority (HFEA)
Dialogue commissioning agent.
The HFEA is dedicated to licensing and monitoring UK fertility clinics and all UK research involving human embryos, and providing impartial and authoritative information to the public.
University of Cardiff
Cardiff University School of Social Sciences is the project evaluator.
OPM is an independent public interest company that helps public services and communities to improve social outcomes. OPM is responsible for delivery of the public dialogue and other engagement strands of the project.
Latest Status Updates
Mitochondria replacement case study - published 7 April 2014
Mitochondria replacement evaluation report - published 7 April 2014
HFEA establishes an Independent Oversight Group.
HFEA publishes timetable for dialogue and other consultation activities
Sciencewise newsletter article on programme timetable. (Pg8)
The public dialogue was announced on 19 January 2012.
Find Out More
- Mitochondria – public dialogue 2012HFEA webpage
- Review of scientific methods to avoid mitochondrial disease 2011HFEA report
- Human Fertilisation and Embryology (HFE) Act HFEA
- Mitochondrial donation: ethical issuesNuffield Council on Bioethics
- Cheltenham Science Festival blogBeth Chesney-Evans, Sceinecwise-ERC Stakeholder Ma
- Public dialogue on controversial subjects: helping the entry process blogAndrew Acland, Sciencewise Dialogue and Engagement
- POST Note: Preventing Mitochondrial DiseaseHouses of Parliament
- Professor Lisa Jardine: Reflection on IVF 25 Oct 2013BBC, POV podcast