472160
14
PUS23110.1177/0963662512472160Public Understanding of ScienceBurgess
Special Issue: Public Engagement in Science
From ‘trust us’ to participatory governance: Deliberative publics and science policy
P U S Public Understanding of Science 2014, Vol. 23(1) 48–52 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0963662512472160 pus.sagepub.com
Michael M. Burgess
University of British Columbia, Canada
Abstract The last 20 years have seen a shift from the view that publics need to be educated so that they trust science and its governance to the recognition that publics possess important local knowledge and the capacity to understand technical information sufficiently to participate in policy decisions. There are now a variety of approaches to increasing the role of publics and advocacy groups in the policy and governance of science and biotechnology. This article considers recent experiences that demonstrate that it is possible to bring together those with policy making responsibility and diverse publics to co-produce policy and standards of practice that are technically informed, incorporate wide social perspectives and explicitly involve publics in key decisions. Further, the process of deliberation involving publics is capable of being incorporated into governance structures to enhance the capacity to respond to emerging issues with levels of public engagement that are proportionate to the issues.
Keywords Biobank governance, biotechnology governance, ethics, public participation, health policy, public understanding of science, public participation in policy, science policy
There is considerable emphasis on the implementation of science, and sometimes social science and public consultation are included as knowledge that requires ‘translation’ or ‘brokering’. Public interest groups such as patient- or disease-oriented organizations are also important for their capacity to bring social and political attention to particular public interests, and to complexities of the experiences of people who share the common interest. It is also important that policy makers and practice leaders consider trade-offs between priorities or moral values and the difference of interests between various segments of the public. Some forms of public consultation or engagement emphasize inclusiveness so that a range of social perspectives are included beyond that of established stakeholders, and so that the policy direction reflects the deliberation of disparate Corresponding author: Michael M. Burgess, W. Maurice Young Centre for Applied Ethics, School of Population and Public Health and Department of Medical Genetics, Faculty of Medicine, University of British Columbia, 227-6356 Agricultural Road, Vancouver BC V6T 1Z2, Canada. Email: [email protected]
Burgess
49
perspectives on a common social problem (Hamlet, 2003; Folz, 1999). This article reflects across deliberations run on a similar model in Canada, the US and Australia (see Table 1). The ‘public’ and ‘public interests’ are abstractions and any attempt to consult the public necessarily presumes or explicitly constructs the ‘public’ and ‘public interests’ as well as the role of publics in democracy and the governance of science (Fung et al., 2003; Irwin, 2001; Jasonoff, 2004). Recruitment and selection of participants into deliberative groups is based on the assumption that it is unrealistic to expect wide public understanding and deliberation but it is possible to derive a sense of what informed and deliberative publics would advise from a smaller group (Goodin and Dryzek, 2006). Decisions about recruitment therefore reflect what organizers think it is important to ‘represent’ in a mini-public, in some cases considering what are demographic proxies for diversity of perspectives on the issues to be deliberated (Longstaff and Burgess, 2010). Similarly, the role of experts and organized interests in the deliberative process must consider the extent to which they have well defined interests, and therefore are stakeholders who need to be understood but explicitly managed to avoid disproportionate influence through overextension of their technical or political interests over participants (MacKenzie and O’Doherty, 2011; MacLean and Burgess, 2010). Policy makers and practice standard leaders are also experts in their area with specific mandates that define and limit their responsibility for public interests. Deliberation is a highly structured activity that must be clear about how the ‘public’ is being constructed through recruitment of participants. Similarly, how the issues to be deliberated are conceptualized is reflected by how stakeholders, including experts, public interest groups, and end-users are involved (Friedman, 2007; Walmsley, 2010). Yet while attention to these details may support good deliberation, they are not sufficient to ensure that deliberations have effects on policy or practice. There has been considerable research on different methods for engaging publics, most with an emphasis on deliberation as a process of respectfully understanding different perspectives and technical issues, including uncertainty, while working toward convergence or consensus (Burgess, 2012; Fung et al., 2003; Gastil and Levine, 2005; Goven, 2003; Rowe and Frewer, 2005; Rowe et al., 2005). In addition to the concerns about how the ‘public’ is constituted by these events, there is the further concern about whether they have any effect on policy or merely serve to legitimate the policy directions that are selected independently of the public engagement. Although this is in part a problem of demonstrating direct effect of social science research on policy, a more significant concern is that consultations may confer legitimacy without having influence (Peterson, 2007). Further, agencies or institutions with the responsibility to set policy or practice standards often lack the funding and expertise to take advantage of the recent developments in the deliberative engagement of publics. Five of the events identified in Table 1 are distinguished from the others by the extent to which they involved decision makers. In these events policy makers or practice leaders collaborated with a deliberative engagement research team to design and implement a deliberative engagement. All of the events recruited a stratified sample of 25 participants to participate in deliberative events over two non-contiguous weekends (cf., Burgess et al., 2008; O’Doherty and Burgess, 2009; O’Doherty et al., 2010; O’Doherty, Hawkins et al., 2012; Western Australia Office of Population Health Genomics Public Health Division, Department of Health, 2010). In the subset of events that involved the decision makers in the design and implementation, they were able to derive useful knowledge from the participants that had immediate outcomes. For example, the BC BioLibrary deliberation related to the cataloguing and distribution of patient data and tissues collected by tumour banks and pathologists. As an outcome of the deliberation the leaders of the British Columbia BioLibrary changed their initial approach to potential donors, and reported a statistically significant increase in uptake (O’Doherty, Ibrahim et al., 2012). In two engagements associated
50
Public Understanding of Science 23(1)
Table 1. Deliberative events 2007–11. Topic
Location
Time
Decision makers
BC biobank Mayo biobank Biobank policy • Stakeholders Biobank policy • Public Salmon genomics BC BioLibrary RDX Remediation Rochester Epidemiology Project
Vancouver, BC Rochester, MN Western Australia
April/May 2007 September 2007 August 2008
Report submitted Involved Involved
Western Australia
November 2008
Involved
Vancouver BC Vancouver BC Vancouver BC Rochester, MN
November 2008 March 2009 April 2010 November 2011
Report submitted Involved Report submitted Involved
with the Mayo Clinic in Rochester, Minnesota, the effect of the deliberation was formalized and extended when some of the participants were recruited to form advisories for the Mayo biobank and the Rochester Epidemiology Project. In Western Australia, two events, one with stakeholders and one with a sample of less invested publics, the branch of the Department of Health responsible for biobanks revised the Organisation for Economic Co-operation and Development (OECD) guidelines based partly on the advice of the deliberative participants (Molster et al., 2011, 2012). There were several components of the deliberative events that contributed to the co-production of practical knowledge and measures. First, the responsible policy or practice leaders identified policy or practice challenges where they could to make choices. The organizers of the events used these to frame the information and facilitation of the events. Second, the policy and practice leaders participated as stakeholders presenting their perspectives and challenges at the outset of the events and as questions arose throughout the events. Third, they observed the deliberations as non-participants. This last component seemed to build an appreciation among the leaders that the participants understood the technical details, wrestled with the trade-offs, understood persistent disagreements among themselves and worked towards recommendations that they could all accept without sacrificing deeply held convictions. The exchange of information, orientation of advice to actual decisions, and openness to working with persistent disagreements rather than treating them as misunderstandings supported the development of knowledge that was useful in setting of practice standards, structuring trustworthy governance and revising policy. The examples also demonstrate three different kinds of outcomes. The BC BioLibrary illustrates how standards of practice can be shaped by participant input. The Western Australia example takes input from participants into policy analysis. The Mayo examples demonstrate adoption of the process and structure of deliberative public engagement as a form of ‘dynamic’ or ‘adaptive’ governance. The practical advice that is created in this context reflects participants’ response to the decision makers’ responsibilities through deliberating technical information, researchers’ and organized stakeholders’ interests, and the different social perspectives raised by informants and the participants. Although it remains important to assess the extent to which the deliberation escaped the hazards of polarization or capture by strong personalities or interests, the involvement of decision makers in the design and implementation of well-designed deliberative processes has increased the influence of deliberative events. Effective and informed participation of diverse publics in policies that shape their future is thereby enhanced. Together with the activities of public-interest stakeholder groups, experts in technical fields and appropriate policy making
Burgess
51
institutions, deliberative engagement of mini-publics enriches the role of civic society in science and science policy, as well as that of direct participation in democratic society. Acknowledgements Genome Canada and Genome BC were the primary funders for the design of the approach and four events (BC and Quebec), with additional assistance from the Canadian Institutes of Health Research. Kieran O’Doherty, David Secko provided leadership and led analysis for these events. Organization, funding and analysis for additional events was led by Barbara Koenig (Mayo Clinic) Hugh Dawkins, Caron Molster, Peter O’Leary (Western Australia) and Peter Watson (BC Biolibary).
References Burgess MM (2012) Deriving policy and governance from deliberative events and mini-publics. In: Howlett M and Laycock D (eds) Regulating Next Generation Agri-Food Biotechnologies: Lessons from European, North American and Asian Experiences. New York: Routledge, pp.220–236. Burgess MM, O’Doherty KC and Secko DM (2008) Biobanking in BC: Enhancing discussions of the future of personalized medicine through deliberative public engagement. Personalized Medicine 5(3): 285–296. Friedman W (2007) Reframing ‘framing’. Public Agenda Occasional Paper Series (1). Available at: ebookbrowse.com/reframing-framing-pdf-d160128199 (accessed 12 December 2012). Foltz F (1999) Five arguments for increasing public participation in making science policy. Bulletin of Science, Technology & Society 19(2): 117–127. Fung A, Wright EO and Abers R (2003) Deepening Democracy: Institutional Innovations in Empowered Participatory Governance. London; New York: Verso. Gastil J and Levine P (2005) The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the Twenty-First Century. San Francisco: Jossey-Bass. Goodin RE and Dryzek J (2006) Deliberative impacts: The macro-political uptake of mini-publics. Politics and Society 34: 219–244. Goven J (2003) Deploying the consensus conference in New Zealand: democracy and de- problematization. Public Understanding of Science 12(4): 423–440. Hamlett PW (2003) Technology theory and deliberative democracy. Science, Technology, & Human Values 28(1): 112–140. Irwin A (2001) Constructing the scientific citizen: Science and democracy in the biosciences. Public Understanding of Science 10(1): 1–18. Jasanoff S (2004) Science and citizenship: A new synergy. Science and Public Policy 31: 90–94. Longstaff H and Burgess MM (2010) Recruiting for representation in public deliberation on the ethics of biobanks. Public Understanding of Science 19(2): 212–224. MacKenzie MK and O’Doherty KC (2011) Deliberating future issues: Minipublics and salmon genomics. Journal of Public Deliberation 7(1). Available at: www.publicdeliberation.net/cgi/viewcontent. cgi?article=1150&context=jpd (accessed 12 December 2012). MacLean S and Burgess MM (2010) Stakeholder influence in public deliberation about biobanks. Public Understanding of Science 19(4): 486–496. Molster C, Maxwell S, Youngs L, Kyne G, Hope F, Dawkins H and O’Leary P (2011) Blueprint for a deliberative public forum on biobanking policy: Were theoretical principles achievable in practice? Health Expectations. Epub ahead of print 7 June 2011. DOI: 10.1111/j.1369–7625.2011.00701.x. Molster C, Maxwell S, Youngs L, Potts A, Kyne G, Hope F, Dawkins H and O’Leary P (2012) An Australian approach to the policy translation of deliberated citizen perspectives on biobanking. Public Health Genomics 15(2): 82–91. O’Doherty KC and Burgess MM (2009) Engaging the public on biobanks: Outcomes of the BC Biobank. Deliberation. Public Health Genomics 12(4): 203–215. O’Doherty KC, Burgess MM and Secko DM (2010) Sequencing the salmon genome: A deliberative public engagement. Genomics, Society and Policy 6(1): 16–33.
52
Public Understanding of Science 23(1)
O’Doherty KC, Hawkins AK and Burgess MM (2012) Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation. Social Science and Medicine 75(9). Epub ahead of print 28 July 2012. DOI: 10.1016/j.socscimed.2012.06.026. O’Doherty KC, Ibrahim T, Hawkins AK, Burgess MM and Watson PH (2012), Managing the introduction of biobanks to potential participants: Lessons from a deliberative public forum. Biopreservation and Biobanking 10(1): 12–21. Petersen A (2007) Biobanks’ ‘engagements’: Engendering trust or engineering consent? Genomics, Society and Policy 3(1): 31–43. Rowe G and Frewer LJ (2005) A typology of public engagement mechanisms. Science, Technology, & Human Values 30(2): 251–290. Rowe G, Horlick-Jones T, Walls J and Pidgeon N (2005) Difficulties in evaluating public engagement initiatives: Reflections on an evaluation of the UK GM nation? Public debate about transgenic crops. Public Understanding of Science 14: 331–352. Walmsley HL (2010) Biobanking, public consultation, and the discursive logics of deliberation: Five lessons from British Columbia. Public Understanding of Science 19(4): 452–468. Western Australia Office of Population Health Genomics Public Health Division, Department of Health. (2010) Guidelines for Human Biobanks, Genetic Research Databases and Associated Data. Available at: www.genomics.health.wa.gov.au/publications/docs/guidelines_for_human_biobanks.pdf (accessed 12 December 2012).
Author biography Michael M. Burgess’s research activity over the past seven years has been through highly collaborative projects on public engagement related to health, science and technology policy based on theories of deliberative democracy. This work has developed an approach to deliberative engagement that has been developed and tested through nine events across topics of biobanks, epidemiologic research, salmon genomics, biofuels and environmental remediation. Most recently, Michael Burgess has emphasized models of governance in biobanks and personalized medicine.
14
PUS23110.1177/0963662512472160Public Understanding of ScienceBurgess
Special Issue: Public Engagement in Science
From ‘trust us’ to participatory governance: Deliberative publics and science policy
P U S Public Understanding of Science 2014, Vol. 23(1) 48–52 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0963662512472160 pus.sagepub.com
Michael M. Burgess
University of British Columbia, Canada
Abstract The last 20 years have seen a shift from the view that publics need to be educated so that they trust science and its governance to the recognition that publics possess important local knowledge and the capacity to understand technical information sufficiently to participate in policy decisions. There are now a variety of approaches to increasing the role of publics and advocacy groups in the policy and governance of science and biotechnology. This article considers recent experiences that demonstrate that it is possible to bring together those with policy making responsibility and diverse publics to co-produce policy and standards of practice that are technically informed, incorporate wide social perspectives and explicitly involve publics in key decisions. Further, the process of deliberation involving publics is capable of being incorporated into governance structures to enhance the capacity to respond to emerging issues with levels of public engagement that are proportionate to the issues.
Keywords Biobank governance, biotechnology governance, ethics, public participation, health policy, public understanding of science, public participation in policy, science policy
There is considerable emphasis on the implementation of science, and sometimes social science and public consultation are included as knowledge that requires ‘translation’ or ‘brokering’. Public interest groups such as patient- or disease-oriented organizations are also important for their capacity to bring social and political attention to particular public interests, and to complexities of the experiences of people who share the common interest. It is also important that policy makers and practice leaders consider trade-offs between priorities or moral values and the difference of interests between various segments of the public. Some forms of public consultation or engagement emphasize inclusiveness so that a range of social perspectives are included beyond that of established stakeholders, and so that the policy direction reflects the deliberation of disparate Corresponding author: Michael M. Burgess, W. Maurice Young Centre for Applied Ethics, School of Population and Public Health and Department of Medical Genetics, Faculty of Medicine, University of British Columbia, 227-6356 Agricultural Road, Vancouver BC V6T 1Z2, Canada. Email: [email protected]
Burgess
49
perspectives on a common social problem (Hamlet, 2003; Folz, 1999). This article reflects across deliberations run on a similar model in Canada, the US and Australia (see Table 1). The ‘public’ and ‘public interests’ are abstractions and any attempt to consult the public necessarily presumes or explicitly constructs the ‘public’ and ‘public interests’ as well as the role of publics in democracy and the governance of science (Fung et al., 2003; Irwin, 2001; Jasonoff, 2004). Recruitment and selection of participants into deliberative groups is based on the assumption that it is unrealistic to expect wide public understanding and deliberation but it is possible to derive a sense of what informed and deliberative publics would advise from a smaller group (Goodin and Dryzek, 2006). Decisions about recruitment therefore reflect what organizers think it is important to ‘represent’ in a mini-public, in some cases considering what are demographic proxies for diversity of perspectives on the issues to be deliberated (Longstaff and Burgess, 2010). Similarly, the role of experts and organized interests in the deliberative process must consider the extent to which they have well defined interests, and therefore are stakeholders who need to be understood but explicitly managed to avoid disproportionate influence through overextension of their technical or political interests over participants (MacKenzie and O’Doherty, 2011; MacLean and Burgess, 2010). Policy makers and practice standard leaders are also experts in their area with specific mandates that define and limit their responsibility for public interests. Deliberation is a highly structured activity that must be clear about how the ‘public’ is being constructed through recruitment of participants. Similarly, how the issues to be deliberated are conceptualized is reflected by how stakeholders, including experts, public interest groups, and end-users are involved (Friedman, 2007; Walmsley, 2010). Yet while attention to these details may support good deliberation, they are not sufficient to ensure that deliberations have effects on policy or practice. There has been considerable research on different methods for engaging publics, most with an emphasis on deliberation as a process of respectfully understanding different perspectives and technical issues, including uncertainty, while working toward convergence or consensus (Burgess, 2012; Fung et al., 2003; Gastil and Levine, 2005; Goven, 2003; Rowe and Frewer, 2005; Rowe et al., 2005). In addition to the concerns about how the ‘public’ is constituted by these events, there is the further concern about whether they have any effect on policy or merely serve to legitimate the policy directions that are selected independently of the public engagement. Although this is in part a problem of demonstrating direct effect of social science research on policy, a more significant concern is that consultations may confer legitimacy without having influence (Peterson, 2007). Further, agencies or institutions with the responsibility to set policy or practice standards often lack the funding and expertise to take advantage of the recent developments in the deliberative engagement of publics. Five of the events identified in Table 1 are distinguished from the others by the extent to which they involved decision makers. In these events policy makers or practice leaders collaborated with a deliberative engagement research team to design and implement a deliberative engagement. All of the events recruited a stratified sample of 25 participants to participate in deliberative events over two non-contiguous weekends (cf., Burgess et al., 2008; O’Doherty and Burgess, 2009; O’Doherty et al., 2010; O’Doherty, Hawkins et al., 2012; Western Australia Office of Population Health Genomics Public Health Division, Department of Health, 2010). In the subset of events that involved the decision makers in the design and implementation, they were able to derive useful knowledge from the participants that had immediate outcomes. For example, the BC BioLibrary deliberation related to the cataloguing and distribution of patient data and tissues collected by tumour banks and pathologists. As an outcome of the deliberation the leaders of the British Columbia BioLibrary changed their initial approach to potential donors, and reported a statistically significant increase in uptake (O’Doherty, Ibrahim et al., 2012). In two engagements associated
50
Public Understanding of Science 23(1)
Table 1. Deliberative events 2007–11. Topic
Location
Time
Decision makers
BC biobank Mayo biobank Biobank policy • Stakeholders Biobank policy • Public Salmon genomics BC BioLibrary RDX Remediation Rochester Epidemiology Project
Vancouver, BC Rochester, MN Western Australia
April/May 2007 September 2007 August 2008
Report submitted Involved Involved
Western Australia
November 2008
Involved
Vancouver BC Vancouver BC Vancouver BC Rochester, MN
November 2008 March 2009 April 2010 November 2011
Report submitted Involved Report submitted Involved
with the Mayo Clinic in Rochester, Minnesota, the effect of the deliberation was formalized and extended when some of the participants were recruited to form advisories for the Mayo biobank and the Rochester Epidemiology Project. In Western Australia, two events, one with stakeholders and one with a sample of less invested publics, the branch of the Department of Health responsible for biobanks revised the Organisation for Economic Co-operation and Development (OECD) guidelines based partly on the advice of the deliberative participants (Molster et al., 2011, 2012). There were several components of the deliberative events that contributed to the co-production of practical knowledge and measures. First, the responsible policy or practice leaders identified policy or practice challenges where they could to make choices. The organizers of the events used these to frame the information and facilitation of the events. Second, the policy and practice leaders participated as stakeholders presenting their perspectives and challenges at the outset of the events and as questions arose throughout the events. Third, they observed the deliberations as non-participants. This last component seemed to build an appreciation among the leaders that the participants understood the technical details, wrestled with the trade-offs, understood persistent disagreements among themselves and worked towards recommendations that they could all accept without sacrificing deeply held convictions. The exchange of information, orientation of advice to actual decisions, and openness to working with persistent disagreements rather than treating them as misunderstandings supported the development of knowledge that was useful in setting of practice standards, structuring trustworthy governance and revising policy. The examples also demonstrate three different kinds of outcomes. The BC BioLibrary illustrates how standards of practice can be shaped by participant input. The Western Australia example takes input from participants into policy analysis. The Mayo examples demonstrate adoption of the process and structure of deliberative public engagement as a form of ‘dynamic’ or ‘adaptive’ governance. The practical advice that is created in this context reflects participants’ response to the decision makers’ responsibilities through deliberating technical information, researchers’ and organized stakeholders’ interests, and the different social perspectives raised by informants and the participants. Although it remains important to assess the extent to which the deliberation escaped the hazards of polarization or capture by strong personalities or interests, the involvement of decision makers in the design and implementation of well-designed deliberative processes has increased the influence of deliberative events. Effective and informed participation of diverse publics in policies that shape their future is thereby enhanced. Together with the activities of public-interest stakeholder groups, experts in technical fields and appropriate policy making
Burgess
51
institutions, deliberative engagement of mini-publics enriches the role of civic society in science and science policy, as well as that of direct participation in democratic society. Acknowledgements Genome Canada and Genome BC were the primary funders for the design of the approach and four events (BC and Quebec), with additional assistance from the Canadian Institutes of Health Research. Kieran O’Doherty, David Secko provided leadership and led analysis for these events. Organization, funding and analysis for additional events was led by Barbara Koenig (Mayo Clinic) Hugh Dawkins, Caron Molster, Peter O’Leary (Western Australia) and Peter Watson (BC Biolibary).
References Burgess MM (2012) Deriving policy and governance from deliberative events and mini-publics. In: Howlett M and Laycock D (eds) Regulating Next Generation Agri-Food Biotechnologies: Lessons from European, North American and Asian Experiences. New York: Routledge, pp.220–236. Burgess MM, O’Doherty KC and Secko DM (2008) Biobanking in BC: Enhancing discussions of the future of personalized medicine through deliberative public engagement. Personalized Medicine 5(3): 285–296. Friedman W (2007) Reframing ‘framing’. Public Agenda Occasional Paper Series (1). Available at: ebookbrowse.com/reframing-framing-pdf-d160128199 (accessed 12 December 2012). Foltz F (1999) Five arguments for increasing public participation in making science policy. Bulletin of Science, Technology & Society 19(2): 117–127. Fung A, Wright EO and Abers R (2003) Deepening Democracy: Institutional Innovations in Empowered Participatory Governance. London; New York: Verso. Gastil J and Levine P (2005) The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the Twenty-First Century. San Francisco: Jossey-Bass. Goodin RE and Dryzek J (2006) Deliberative impacts: The macro-political uptake of mini-publics. Politics and Society 34: 219–244. Goven J (2003) Deploying the consensus conference in New Zealand: democracy and de- problematization. Public Understanding of Science 12(4): 423–440. Hamlett PW (2003) Technology theory and deliberative democracy. Science, Technology, & Human Values 28(1): 112–140. Irwin A (2001) Constructing the scientific citizen: Science and democracy in the biosciences. Public Understanding of Science 10(1): 1–18. Jasanoff S (2004) Science and citizenship: A new synergy. Science and Public Policy 31: 90–94. Longstaff H and Burgess MM (2010) Recruiting for representation in public deliberation on the ethics of biobanks. Public Understanding of Science 19(2): 212–224. MacKenzie MK and O’Doherty KC (2011) Deliberating future issues: Minipublics and salmon genomics. Journal of Public Deliberation 7(1). Available at: www.publicdeliberation.net/cgi/viewcontent. cgi?article=1150&context=jpd (accessed 12 December 2012). MacLean S and Burgess MM (2010) Stakeholder influence in public deliberation about biobanks. Public Understanding of Science 19(4): 486–496. Molster C, Maxwell S, Youngs L, Kyne G, Hope F, Dawkins H and O’Leary P (2011) Blueprint for a deliberative public forum on biobanking policy: Were theoretical principles achievable in practice? Health Expectations. Epub ahead of print 7 June 2011. DOI: 10.1111/j.1369–7625.2011.00701.x. Molster C, Maxwell S, Youngs L, Potts A, Kyne G, Hope F, Dawkins H and O’Leary P (2012) An Australian approach to the policy translation of deliberated citizen perspectives on biobanking. Public Health Genomics 15(2): 82–91. O’Doherty KC and Burgess MM (2009) Engaging the public on biobanks: Outcomes of the BC Biobank. Deliberation. Public Health Genomics 12(4): 203–215. O’Doherty KC, Burgess MM and Secko DM (2010) Sequencing the salmon genome: A deliberative public engagement. Genomics, Society and Policy 6(1): 16–33.
52
Public Understanding of Science 23(1)
O’Doherty KC, Hawkins AK and Burgess MM (2012) Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation. Social Science and Medicine 75(9). Epub ahead of print 28 July 2012. DOI: 10.1016/j.socscimed.2012.06.026. O’Doherty KC, Ibrahim T, Hawkins AK, Burgess MM and Watson PH (2012), Managing the introduction of biobanks to potential participants: Lessons from a deliberative public forum. Biopreservation and Biobanking 10(1): 12–21. Petersen A (2007) Biobanks’ ‘engagements’: Engendering trust or engineering consent? Genomics, Society and Policy 3(1): 31–43. Rowe G and Frewer LJ (2005) A typology of public engagement mechanisms. Science, Technology, & Human Values 30(2): 251–290. Rowe G, Horlick-Jones T, Walls J and Pidgeon N (2005) Difficulties in evaluating public engagement initiatives: Reflections on an evaluation of the UK GM nation? Public debate about transgenic crops. Public Understanding of Science 14: 331–352. Walmsley HL (2010) Biobanking, public consultation, and the discursive logics of deliberation: Five lessons from British Columbia. Public Understanding of Science 19(4): 452–468. Western Australia Office of Population Health Genomics Public Health Division, Department of Health. (2010) Guidelines for Human Biobanks, Genetic Research Databases and Associated Data. Available at: www.genomics.health.wa.gov.au/publications/docs/guidelines_for_human_biobanks.pdf (accessed 12 December 2012).
Author biography Michael M. Burgess’s research activity over the past seven years has been through highly collaborative projects on public engagement related to health, science and technology policy based on theories of deliberative democracy. This work has developed an approach to deliberative engagement that has been developed and tested through nine events across topics of biobanks, epidemiologic research, salmon genomics, biofuels and environmental remediation. Most recently, Michael Burgess has emphasized models of governance in biobanks and personalized medicine.
