Public engagement of science. ENGAGE, 25 June 2010 Frans van Dam, CSG
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1 Public engagement of science ENGAGE, 25 June 2010 Frans van Dam, CSG
2 Contents My background Introduction: from engagement of publics to engagement of science Case 1: Heel prick scandal (plenary) Case 2: Biobank sit-in (groups) (Lessons)
3 My organisation Centre for Society and Genomics Mission: analyze, assess and improve genomics <> society Network organisation: 45 projects at 10 universities 15 other genomics centres, founded by Netherlands genomics Initiative
4 My background MSc in molecular biology Consumer advocacy, societal aspects of life sciences, organizer of debates At CSG: head of communications Corporate Public Education (secondary schools)
5 Introduction Public engagement Engagement of publics (citizens, laymen) in the development or implementation of science, for better entrenchment Methods Consensus conferences, public dialogue,... Examples GM Nation, Meeting of minds,
6 Introduction 2 Some thoughts about stakeholder engagement Definition: actors with articulated interests Experienced, motivated Establish relationship Representation Influential CSG projects: stakeholder involvement is requirement
7 Introduction 3 Stakeholder engagement Problem 1: stakeholders outside sciences usually problem-oriented (versus technologydriven) Problem 2: timing of involvement Problem 3: feed back into policy Works best in applied research (using user interface groups, patients councils etc)
8 Engagement of science What happens if society unexpectedly knocks at the door? Two cases: Heel prick scandal Biobank occupation / sit-in
9 Case 1 heel prick 13 May 2000 Enschede fireworks disaster Explosion at fireworks production company in urban quarter 23 casualties > 900 injured 400 houses destroyed 15 streets incinerated
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12 Heel prick start of issue 19 May 2000: article in daily newspaper Heel prick useful for identification; anonymously stored blood samples can be used for DNA-analysis Heel prick card = Guthry card
13 Heel prick start of issue Article said: Identification of 4 year old child Heel prick cards stored at RIVM (National Institute for Public Health and the Environment) Since 1993: 1.4 million cards USA: example of solved murder case
14 Heel prick old policies 2000 Policy at RIVM Used for 3 rare, curable metabolic diseases Cards stored for for additional testing Use for medical research No limited storage period Not for forensic use Exceptional cases, with parent s consent
15 Heel prick Response to article More media attention Parents pressure group Comité Hielprik Questions in Parliament
16 Heel prick - Issues Absence of permission of storage Absence of limit for storage period Absence of permission for medical research Possibility to personalize research results Can storage be regarded as registration of personal data?
17 Heel prick communication 1 We are a team of communication advisors at health ministry / RIVM. Press wants answers. Parliamentarians need quick reply How to respond?
18 Heel prick communication 2 Problem analysis Mistakes (to admit)? Procedures followed? Stakeholders involved? Relation with fireworks disaster... Communication strategy
19 Heel prick - outcomes Politicy advice on issue of registration (by Registratiekamer ) Blood samples are not personal data as such, they are a source of personal data Better communication with (future) parents Explicit opt-out procedures Better governmental control storage period limit (5y)
20 Heel prick outcomes 2 New communication policies More info moments during pregnancy Improved website RIVM New brochure for parents
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24 Case 2 biobank sit-in De Volkskrant Daily quality newspaper Circulation: (third) Orientation: left-centre De Volks-krant (hoax) Only on 7 June 2010 Circulation: (at train stations etc) Orientation: antiglobalist, critical
25 Biobank sit-in - LifeLines North of Netherlands Goal: further our understanding of the development of chronic disease for improving prevention and treatment In 30 years: individuals People can apply for participation themselves Start: 2006 (children: 2010)
26 Biobank sit-in - LifeLines Participants Questionnaire Physical examination Blood and urine samples Additional research (in some cases)
27 Biobank sit-in why? Biobank has commercial interests Application for gene patents Bad genes versus poor environment Is a biobank occupation a realistic scenario?
28 Biobank sit-in - assignment Situation: Biobank sit-in started this morning 1. Biobank/hospital management How to respond now? How to prevent this in the future? 2. Activists group How to justify our action? 3-4. Press What s the story?
29 Biobank sit-in - assignments Analyze issue (from a communication point of view) Design your strategy: what is your main message / issue Choose spokespersons Materials: Volks-krant article + assignment 30 time No rights and wrongs!!
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