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Mitochondria Replacement

Sciencewise funded project 2012

Background

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.

More background information

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;

 

Key Impacts

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.

Project Quotes

“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

Delivered By

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
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.