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

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 …

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

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  1. Public deliberation and emerging biotechnologies: Achieving meaningful public input for complex issues Kieran O’Doherty kieran.odoherty@uoguelph.ca

  2. Science & Technology • Science changes our society • Science affects our everyday lives • Cell phones; computers … • Pharmaceuticals; medical research; GM crops …

  3. 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

  4. 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

  5. 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)

  6. 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

  7. Public Deliberation in B.C. • Microbial genomics and RDX pollution • Human Tissue biobanks • Salmon genomics

  8. 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

  9. 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

  10. Deliberating Biobanks • Who to invite? • How to inform them about the issues? • How to structure the conversation? • How to present the results?

  11. 1. Representation & Recruitment • Participatory democracy and inclusion • Scarce democratic resources • Construct of minipublic • Random invitation & demographic stratification • Shift from statistical representativeness to political legitimacy

  12. 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!

  13. 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

  14. 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

  15. Information • Booklet • Speakers • Bibliographies • Ongoing contact with research team

  16. 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

  17. 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

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