This document summarizes a public dialogue case study conducted by Sciencewise to explore emerging in vitro fertilization techniques for preventing mitochondrial disease transmission. Over 3,000 public and stakeholder participants were involved through surveys, workshops, focus groups and open consultations. The dialogue found broad support for allowing the techniques with certain conditions. It directly influenced policy by providing recommendations to the HFEA and UK government. The multi-method engagement process was seen as exemplary and helped promote new legislation currently being debated in Parliament.

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Mitochondria replacement:
A public dialogue case
study
Robin Clarke
Dialogue and Engagement Specialist, Sciencewise

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“to seek public views on emerging IVF-based
techniques to prevent the transmission of
mitochondrial disease,” with support from
Sciencewise Expert Resource Centre
Conduct a public dialogue exercise to
explore:
•The ethical aspects and issues involved in
techniques to avoid mitochondrial disease;
and
•The practical implications of allowing
such techniques within regulation
Regulations would need to be passed in
both houses of Parliament
Mitochondria replacement: What the government
asked HFEA to do?

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What is mitochondria replacement?
Mitochondrial disease caused by
faults in the small amount of DNA in
the mitochondria, inherited from the
mother
•Pronuclear transfer & maternal spindle
transfer: transfer nuclear material from an
egg/embryo containing unhealthy
mitochondria to a healthy donor
egg/embryo.
•DNA from parents and a donor
•These techniques, which are referred to as
mitochondria replacement, are illegal in
treatment in the UK.

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Mitochondria replacement: hopes & concerns
• Estimated 1 in 5,000 people affected by
mitochondrial disease, around 1 in 6,500 children
thought to develop serious mitochondrial disorder.
• Range of conditions linked to mitochondrial
disease – from mild to life threatening – no known
cure or treatment.
Hopes? …for women with mitochondrial disease who
want children genetically related to them without
passing on disease.
Concerns?... “3 parent babies”; akin to cloning,
genetic modification of humans; interfering with
natural or spiritual aspects of reproduction…
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Aim of the dialogue & consultation
To identify:
• The process of deliberation people
use to form views on mitochondria
replacement
• The differences between informed and
uninformed public views on these
techniques
• Interested stakeholders’ arguments for
and against the use of the techniques
• Analysis of the ethical and regulatory
issues involved.
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Multi-method approach
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Selected public audiences
(“uninformed”)
•Public representative survey –
1000 face to face interviews/ “top
of head” views with little
information
•3 sets of deliberative public
workshops (met twice) – 90
participants in total.
• Scientists & Bio-ethicist
specialist input
• Videos, posters, quizzes,
info sheets, presentations
& questions
Self-Selecting/ Interested
audiences (“informed”)
•Open consultation website
& questionnaire
•2 x Open public
consultation meetings
•Patient focus group – those
affected by mitochondrial
disease

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Key messages from deliberative workshops
Broadly agreed support for the new techniques with caveats
and conditions:
•Individual parent choice
•Provision of information to make an informed choice
•Regulated environment
•Parents should be offered counselling
•Donor’s identity should be protected – though maybe some
information to the child?
•Fair access to the techniques – available on NHS free of
charge
•Only to produce a healthy child, no other purpose
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Impact & Influence
• A total of 3,004 public and stakeholder participants
involved:
• 1,069 public participants - 90 in deliberative
workshops plus 979 in poll survey;
• 1935 stakeholders - 7 in focus group, 92 in open
meetings and 1,836 responses to the open
consultation questionnaire.
• Led to direct policy influence, outputs integrated into
the HFEA process to develop recommendations to
Government
• Enabled promotion of new legislation (draft regulation
for consultation – earlier this year) to allow and regulate
the use mitochondria replacement techniques, by
demonstrating public support in principle, and the
precautions necessary to retain that support.
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Impact & Influence #2
• Sciencewise was seen as bringing a
'badge of quality'.
• Evaluation & feedback, suggests this was
an exemplary process, particularly the
stakeholder engagement in the
governance, and the multi-strand
consultation.
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Public dialogue is particularly valuable
when….
• Policy is at an early stage of development and public interests
and concerns may be satisfied if understood and responded to
early
• Issues are /potentially contentious and there is potentially
strong public interest
• Technical expertise and stakeholder views alone are not
sufficient
• Successful implementation will depend on getting the
practicalities right

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Issue still being hotly debated…

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Currently being debated and voted on in
Parliament