4. www.sciencewise-erc.org.uk 4
What proportion of human genetic
material would give a transgenic goat
human rights?
A) It should never have human rights
B) 25%
C) 51%
D) 75%
E) 100%
5. www.sciencewise-erc.org.uk
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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9. Costs of decisions
For simple, uncontroversial issues, a narrow engagement may be cost effective
10. Costs of decisions
But for complex, controversial issues, an upfront investment in more substantive
engagement avoids much greater costs of conflict.
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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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13. www.sciencewise-erc.org.uk
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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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.
19. www.sciencewise-erc.org.uk
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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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20. www.sciencewise-erc.org.uk
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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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21. www.sciencewise-erc.org.uk
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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22. www.sciencewise-erc.org.uk
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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23. www.sciencewise-erc.org.uk
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 23
24. www.sciencewise-erc.org.uk
Key messages from public dialogue
Conditional 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?
25. www.sciencewise-erc.org.uk
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’ 25
26. www.sciencewise-erc.org.uk
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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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.
29. www.sciencewise-erc.org.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?
30. www.sciencewise-erc.org.uk
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.
31. www.sciencewise-erc.org.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. 32
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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 mitochondrial
replacement techniques, by demonstrating public
support in principle, and the precautions
necessary to retain that support. 35
36. www.sciencewise-erc.org.uk
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
No conferring – please just write down your answer to the polling question. Now, I’d like a show of hands – who is comfortable that they’ve got the right answer?
Now, I’d like you to share and discuss your response with the rest of the people on your table for a couple of minutes…
…ok. Time’s up. I’d like another show of hands – who is more comfortable or less uncomfortable with their answer now?
And who has come up with some new issues or insights in the discussion?
And who needs more time?
This is what Sciencewise is hugely expert in: dialogue
Not just a one way information push, but rather a two way process, a conversation
It’s not as fast as a poll, though they may be able to support you if you do need to poll…
Dialogue – participants takes part over two weekends
1st weekend: given information, access to experts etc
2nd weekend: time to debate and discuss
Done well, dialogue is an open interactive process that can help you
explore and understand the risks and benefits of new technology,
how to minimise the risks and maximise the benefits
and give you a better basis for investment decisions.
Bottom line
The public are the ultimate customer, innovation will only work if it brings mutual benefits
PAS 2014:
7 in 10 people said scientists should listen more to what ordinary people think
Half of them think that technologists are very secretive
73% want technologists to share information on technology before it is developed
Engage to reduce risk of failure and learn from your customers – benefits outweigh costs
For example, Sciencewise sponsored work on cyber security cost £140k, industry wide benefits of billions
What department has decided (ie things that are no longer open to influence, even if there is significant pressure or backlash)
What are department preferences (but these may be open to negotiation, change or influence if particularly strong views, important information or insights come to light from stakeholders)
What is open (department has no preference)
The 2010 Sciencewise sponsored dialogue on Animals in research , run by the Department of Health and the academy of Medical Sciences, identified the boundaries of public acceptability in these research areas, including those areas that would require special scrutiny in future when considering licences for research. This fed into the adoption in the UK of the EU Directive on experimentation on animals in research. The AMS believed that the dialogue had influenced the lack of an objections to the publication of the proposals by religious groups, following the well documented public input.
2. Delivers cost effective public dialogue which can lead to significant short and long term financial savings
The 2011 Sciencewise sponsored public dialogue on wellbeing (run by the Department of Health and new economics foundation in 2011) demonstrated that a national social marketing campaign would not be effective in achieving the desired behaviour change. The decision not to proceed with the campaign saved DH an estimated £10 million per year; the dialogue cost £264,000 in total. Private conversations confirm that the dialogue provided the evidence needed to inform the internal departmental debate that led to this decision.
3. Opens up the debate by engaging the public increases the responsiveness and accountability of policy.
The 2011 Sciencewise sponsored Synthetic biology, run by BBSRC and EPSRC, contributed to the ethical, social and regulatory elements of the Synthetic Biology Roadmap for the UK. The results also influenced the scope, tone and content of the Joint Synthetic Biology Initiative, which provides research funds of £24 million, and was seen by several policy makers involved as having avoided a 'GM situation'. The global synthetic biology market was estimated to grow from $1.6 billion in 2011 to $10.8 billion in 20165 ; the Synthetic Biology public dialogue cost £334,000)
In 2013 Sciencewise sponsored a health research public dialogue, run by the NHS Health Research Authority, to feed into a new agenda for Transparent Research. The agenda, which was published in May 2013, drew on a range of evidence including the results of the dialogue. The input from the public particularly affected the section of the agenda on publication of research results and has led to on going work to develop a public involvement strategy to set standards and guidance on how participants should be informed about the outcome of health research findings.
Key message here is to get across what we are practically, but also what is different about us compared to other parts of government.
Brief detail
Sciencewise brings something different to the policy process from other bits of Whitehall.
has some resource;
SW has cross-Govt remit to do this stuff;
understands how engage public from better comms of issues to working collaboratively and specifically can support on more deliberative forms of engagement;
