Achieving meaningful public input for complex issues

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6 Δεκ 2012 (πριν από 4 χρόνια και 6 μήνες)

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Public deliberation and emerging
biotechnologies: Achieving meaningful public
input for complex issues


Kieran O’Doherty

kieran.odoherty@uoguelph.ca

Science & Technology


Science changes our society






Science affects our everyday lives


Cell phones; computers …


Pharmaceuticals; medical research; GM crops …

Science & Society


Science does not ‘just happen’


It is a social activity:


Funding decisions


Values associated with research directions


In laboratory


Social values and norms governing
applications of research


Science & Democracy


Controversial biotechnology requiring
policy


Stem cell research


GM crops


Cloning


Given that social policy affects us all, need
mechanism to provide avenue for public
voice to be included


What is Deliberation?


“[D]
eliberation

is debate and discussion aimed at
producing reasonable, well
-
informed opinions in
which participants are willing to revise preferences
in light of discussion, new information, and claims
made by fellow participants. Although consensus
need not be the ultimate aim of deliberation, and
participants are expected to pursue their interests,
an overarching interest in the legitimacy of
outcomes (understood as justification to all affected)
ideally characterizes deliberation.


Chambers (2003, p. 309)

Why is Deliberation Useful?


What about town hall meetings?


Why not use typical methods of social
science inquiry (surveys, focus groups)?


Lack of knowledge (obscure topics)


Technical expertise (complex topics)


Lack of homogeneity of public opinion


Deliberation offers mechanisms to address
these; in addition:


Offers active role in governance

Public Deliberation in B.C.


Microbial genomics and RDX pollution


Human Tissue biobanks


Salmon


genomics

Human Tissue Biobanks


Large collections of tissue samples


Blood, tumours, biopsy samples


Extremely useful for health research


Uncertainty regarding ethics protocols


Informed consent


Privacy


Return of results


Benefit sharing


Biobanks and Deliberative
Democracy


Biomedical research


Relies to large extent on public funding


Relies on individuals’ participation; provision of
samples, information


Outcomes are dramatically changing social
landscape


Deliberating Biobanks

1.
Who to invite?

2.
How to inform them about the issues?

3.
How to structure the conversation?

4.
How to present the results?

1. Representation & Recruitment


Participatory democracy and inclusion


Scarce democratic resources


Construct of
minipublic


Random invitation & demographic stratification


Shift from statistical representativeness to
political legitimacy

2. Forum Design & Facilitation


Deliberation requires


Time


Money


Good organisation


Participants need to be comfortable and trust


Each other


The organisers


The facilitator needs to know what’s going on!



Forum Design


4 days of deliberation


Day 1: information and introduction to
deliberation


Day 2
-
4: deliberation in small and large
groups


Work towards consensus, but recognise and
document persistent disagreement


Ratify conclusions of participants

3. Provision of Information &
Framing


What information is provided to
participants?


‘Neutral’ information may not be available


Provision of range of available perspectives


What questions are presented for
deliberation?


Open structure


Narrow structure


Guided structure

Information


Booklet


Speakers


Bibliographies


Ongoing contact with


research team


4. Synthesis & Presentation of
Results


Who decides what the result of the
deliberation is?


Thematic analysis of transcripts?


Consultant/facilitator writes report?


How do you know when you’ve reached
consensus?


Notion of
Deliberative Output


Importance of conceptualising format of
outcomes clearly from the start

What happens afterwards?


Uptake of deliberation results by BC
BioLibrary


Deliberation participants have become
members of advisory boards


Process of deliberation has been used in
other jurisdictions