mitochondrial replacement case study part 2
TRANSCRIPT
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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