Mitochondrial Replacement Case Study Part 2

www.sciencewise-erc.org.uk

Mitochondria replacement: A public dialogue case

study

Robin Clarke

Dialogue and Engagement Specialist, Sciencewise


“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?


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.


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…

4


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.

5


Multi-method approach

6

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


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

7


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.

8


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.

9


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


Issue still being hotly debated…


Currently being debated and voted on in Parliament

Mitochondrial Replacement Case Study Part 2

Government & Nonprofit

uninformed public views

public dialogue exercise

techniques available

techniques analysis

new techniques

unhealthy mitochondria

selected public audiences

public representative