Introduction to Public Dialogue Slides May 2015

Introducing public dialogue

Amy PollardDialogue Manager, Sciencewise

Reema PatelPolicy Analyst, Sciencewise

www.sciencewise-erc.org.uk

About this session (1hr 30 mins)

• Introduction to public dialogue• Real life case studies• Routes to further support• Questions and discussion

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www.sciencewise-erc.org.uk 3


What proportion of human genetic material would give a transgenic goat human rights?

A) It should never have human rightsB) 25%C) 51%D) 75%E) 100%


What is public dialogue?

A process of engagement that brings together members of the public, policy makers and experts

• To discuss in depth, and where possible reach conclusions about a particular issue.

• To highlight the social, ethical and practical issues raised by up-coming policies.

• To make more robust decisions reflecting (rather than at odds with) public values.

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Why?


The engagement spectrum


Decide Announce Defend vs Engage Deliberate Decide

Costs of decisions

For simple, uncontroversial issues, a narrow engagement may be cost effective

Costs of decisions

But for complex, controversial issues, an upfront investment in more substantive engagement avoids much greater costs of conflict.


What can change?

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What does it mean in practice?

• Bringing together ‘the whole system in the room’ – the public, experts and policy makers

• Independent facilitators • Clear expectations of the extent of

public influence (informing but not deciding)

• An informed discussion• Often meeting more than once,

allowing time for reflection• Evaluation afterwards

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Impact on policy

• Opens up potential for movement on controversial areas of policy

• Delivers significant cost savings• Increases responsiveness and

accountability of policy• Supports behaviour change

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Sciencewise is…..

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Where did Sciencewise come from?

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How does it work?

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• Bespoke support and step-by-step advice from a Dialogue and Engagement Specialist.

• Concept Note and Business Case developed and agreed.

• Support with procurement and commissioning.

• Support on governance and quality control.

• Support on evaluation.



A dialogue workshop….

Case Study for Public Dialogue – Synthetic Biology

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Case Study – Synthetic Biology

What is Synthetic Biology?

Synthetic biology is an emerging area of science and technology which involves the creation of new biological parts, or redesigning existing biological parts to carry out new and useful tasks,

Controversial?- Modifies existing biological systems- Create new biological systems (e.g

biofuels; drugs and diagnostics; bioremediation and biosensors)

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Synthetic Biology – The Issues

The development of synthetic has moral, social and ethical implications. For example

- Bio-security– hostile micro-organisms to human beings could be developed

- Social justice concerns – production of drugs using synthetic biology could reduce market for ‘natural drugs’ in developing countries

- ‘Meddling with nature’ – concerns about respect and uncertainty associated with interfering with natural landscape

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Public Dialogue – Sciencewise’s Role

Sciencewise were commissioned by the Biotechnology and Biological Sciences Research Council (BBSRC) and Engineering and Physical Sciences Research Council (EPSRC) over a 21 month period from July 2009 to April 2011 to run public dialogues

Number of public participants: 160

Number of experts/stakeholders: 41

Steering Group = 11

Oversight Group = 18

Cost of dialogue project: £334,000

Sciencewise funding = £234,000

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Public Dialogue – Aims and Objectives

- undertake early public engagement to help determine the future direction of this potentially important research area

- ensure the views uncovered by dialogue were expressed to a broad range of policy makers; and ensure participants had a meaningful role in informing

- to inform ongoing dialogue and policymaking esp in research councils as field of synthetic biology developed.

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How did we involve the public?

Phase 1 – A series of in-depth telephone interviews with 41 stakeholders to understand some of the technical, social and economic drivers shaping synthetic biology in the UK

Phase 2 – Delivered 12 deliberative workshops bringing 160 members of the public together in total (three times in four locations) + scientists, social scientists and policymakers

Phase 3- after findings brought together – 8 participants from deliberative workshops brought together to ensure findings reflected the discussions had

Report launch – brought together participants with a range of interested stakeholders and organisations

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Key messages from public dialogueConditional support for synthetic biology - Enthusiasm

for the possibility of the science but….

Socio-ethical Implications

Fears about control; benefits; health/environmental impacts; misuse

Public’s Role in Innovation- Sense that public should be involved in innovation

(shift away from ‘pipeline’ model of innovation

Responsibility: Scientists and policymakers should consider- What is the purpose?- Why do we want to do this?- What are we going to gain from it?- What else is it going to do?- How do you know that you are right?


Impact and Influence – UK Gov Policy- The Parliamentary and Scientific Committee

held a meeting focused on the dialogue in Westminster

- Dialogue outputs acknowledged in government response to HoC Science and Tech Committee report on bioengineering

- Dialogue informed makeup of the UK Synthetic Biology Roadmap for the UK (published by TSB in 2012)

- Chancellor in 2013 announced significant amount of funding for SynBio

Feedback from Research Councils – ‘we can’t link that directly to dialogue but we wouldn’t have had the confidence to move forward on SynBio without dialogue’

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Impact and Influence - Beyond the UK

Responsible Research and Innovation - 5 questions identified by public contributed to

developing concept of ‘responsible innovation’ (ensuring science proceeds in a pragmatic and responsible way); prompting a £60,000 investment into scoping concept out

International Interest- BBSRC and EPSRC have advised the

Lawrence Berkeley National Laboratory, UC Berkeley, SynBERC, France Observatoire De La Biologie De Synthese on public dialogues

- Dialogue featured in European Science Foundation publication

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Case Study for Public Dialogue – Mitochondria Replacement

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What is mitochondria replacement?

Mitochondrial disease is 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.


“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

Mitochondrial 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.


Mitochondrial 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


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 34


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 mitochondrial replacement techniques, by demonstrating public support in principle, and the precautions necessary to retain that support. 35


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 (‘’upstream’’)

• 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 hotly debated recently…


Has been debated and voted through the House of Commons and the Lords

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Sciencewise Resources

Project funding and support

Dialogue & Engagement Specialists

Training and Mentoring

Social Intelligence & Research

Website

Newsletter

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Q&A

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Contact usReema Patel (

[email protected]), Policy Analyst, Sciencewise

Amy Pollard ([email protected]), Dialogue Manager, Sciencewise.

Website: www.sciencewise-erc.org.uk

Helpline: 01235 753 645

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mailto:[email protected]

mailto:[email protected]

http://www.sciencewise-erc.org.uk/

Government & Nonprofit

Introduction to Public Dialogue Slides May 2015