Perspectives on Engaging the Public in the Ethics of Emerging Biotechnologies: From Salmon to Biobanks to Neuroethics

References

• 6, P . The governance of technology . White paper prepared for the workshop ‘Democratic Governance of Technological Change in an Era of Globalisation.’ . London .
   Google Scholar
• Abelson , J. , Forest , P. G. , Eyles , J. , Smith , P. , Martin , E. and Gauvin , F. P. 2003 . Deliberations about deliberative methods: Issues in the design and evaluation of public participation processes . Social Science and Medicine , 57 ( 2 ) : 239 – 251 .
   PubMed Web of Science ®Google Scholar
• Abelson , J. and Gauvin , F. P. 2006 . Assessing the Impacts of Public Participation: Concepts, Evidence, and Policy Implications , Ottawa : Canadian Policy Research Network Inc .
   Google Scholar
• Ahmad , R. , Bailey , J. , Bornik , Z. , Danielson , P. , Dowlatabadi , H. , Levy , E. and Longstaff , H. 2006 . A Web-based Instrument to Model Social Norms: NERD Design and Results . Integrated Assessment , 6 ( 2 ) : 9 – 36 .
   Google Scholar
• Andre , P. , Enserink , B. C. D. and Croal , P. 2006 . Public Participation International Best Practice Principles , Fargo , , ND, USA : International Association for Impact Assessment .
   Google Scholar
• Avard , D. , Bucci , L. M. , Burgess , M. M. , Kaye , J. , Heeney , C. and Cambon-Thomsen , A. 2008 . Public Health Genomics and public participation: points to consider . Journal of Public Deliberation , (In press)
   Google Scholar
• Blank , R. H. 2007 . Policy implications of the new neuroscience . Cambridge Quarterly of Healthcare Ethics , 16 : 169 – 180 .
   PubMed Web of Science ®Google Scholar
• Bohman , J. F. 1998 . The coming of age of deliberative democracy . Journal of Political Philosophy , 6 ( 4 ) : 399 – 423 .
   Web of Science ®Google Scholar
• Burgess , M. M. 2005 . “ Ethical Analysis of Representation in the Governance of Biotechnology ” . In Crossing Over. Genomics in the Public Arena , Edited by: Einsiedel , E and Timmermans , F . 157 – 172 . Calgary : University of Calgary Press .
   Google Scholar
• Burgess , M. M. and Tansey , J. 2006a . Complexity of public interest in ethical analysis of genomics: Ethical reflections on salmon genomics/aquaculture . Integrative Assessment , 6 ( 2 ) : 37 – 57 .
   Google Scholar
• Burgess , M. M. and Tansey , J. 2006b . “ Technology, democracy and ethics: Democratic deficit and the ethics of public engagement ” . In Emerging Technologies: Hindsight and Foresight: Technology, democracy and ethics , Edited by: Einseidel , Edna . Vancouver : UBC Press .
   Google Scholar
• Burgess , M. M. , O'Doherty , K. C. and Secko , D. M. 2008 . Biobanking in BC: Enhancing discussions of the future of personalized medicine through deliberative public engagement . Personalized Medicine , 5 ( 3 ) : 285 – 296 .
   Web of Science ®Google Scholar
• Collins , F. S. , Green , E. D. , Guttmacher , A. E. and Guyer , M. S. 2003 . A vision for the future of genomics research . Nature , 422 ( 6934 ) : 835 – 847 .
   PubMed Web of Science ®Google Scholar
• Danielson , P. 2007 . The place of ethics in a unified behavioral science . Behavorial and Brain Sciences , 30 : 23 – 24 .
   Web of Science ®Google Scholar
• Danielson , P. , Mesoudi , A. and Stanev , R. 2008 . NERD & Norms: Framework and experiments . Philosophy of Science , (In press).
   PubMed Web of Science ®Google Scholar
• Dickerson , B. C. 2007 . Advances in functional magnetic resonance imaging: Technology and clinical applications . Neurotherapeutics , 4 ( 3 ) : 360 – 370 .
   PubMed Web of Science ®Google Scholar
• Doucet , H. 2005 . Imagining a neuroethics which would go further than genethics . American Journal of Bioethics , 5 ( 2 ) : 29 – 31 .
   PubMed Web of Science ®Google Scholar
• Dryzek , J. 1990 . Discursive Democracy: Politics, Policy and Political Science , Cambridge : Cambridge University Press .
   Google Scholar
• Editorial . 2006 . Neuroethics needed . Nature , 441 ( 7096 ) : 907
   Web of Science ®Google Scholar
• Farah , M. J. 2007 . Social, legal, and ethical implications of cognitive neuroscience: “Neuroethics” for short . Journal of Cognitive Neuroscience , 19 ( 3 ) : 363 – 364 .
   PubMed Web of Science ®Google Scholar
• Fins , J. J. 2008 . A leg to stand on: Sir William Osler and Wilder Penfield's “Neuroethics,” . American Journal of Bioethics , 8 ( 1 ) : 37 – 46 .
   PubMed Web of Science ®Google Scholar
• Gallup International. (2005). Voice of the people. http://www.voice-of-the-people.net (Accessed: 20 April 2008 ).
   Google Scholar
• Gastil, J., and Black, L. W. (2008). Public deliberation as the organizing principle of political communication research, Journal of Public Deliberation, 4(1): Article 3. http://services.bepress.com/jpd/vol4/iss1/art3 (Accessed: 6 October 2008 ).
   Google Scholar
• Gastil , J. and Levine , P. 2005 . The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the Twenty-First Century , San Francisco : Jossey-Bass .
   Google Scholar
• Greely , H. T. 2006 . Neuroethics and ELSI: Similarities and differences . Minnesota Journal of Law, Science & Technology , 7 : 599 – 637 .
   Google Scholar
• Greely , H. T. and Illes , J. 2007 . Neuroscience-based lie detection: The urgent need for regulation . American Journal of Law and Medicine , 33 ( 2–3 ) : 377 – 431 .
   PubMed Web of Science ®Google Scholar
• Greene , J. D. and Cohen , J. D. 2004 . For the law, neuroscience changes nothing and everything . Philosophical Transactions of the Royal Society of London, Series B , 359 : 1775 – 1785 .
   PubMed Web of Science ®Google Scholar
• Gutmann , A. and Thompson , D. 1996 . Democracy and Disagreement , Cambridge : Belknap Press .
   Google Scholar
• Illes , J. , Blakemore , C. , Hansson , M. G. , Hensch , T. K. , Leshner , A. , Maestre , G. , Magistretti , P. , Quirion , R. and Strata , P. 2005 . International perspectives on engaging the public in neuroethics . Nature Reviews Neuroscience , 6 ( 12 ) : 977 – 982 .
   PubMed Web of Science ®Google Scholar
• Illes , J. and Racine , E. 2005 . Imaging or imagining? A neuroethics challenge informed by genetics . American Journal of Bioethics , 5 ( 2 ) : 5 – 18 .
   PubMed Web of Science ®Google Scholar
• Illes , J. and Bird , S. J. 2006 . Neuroethics: A modern context for ethics in neuroscience . Trends in Neuroscience , 29 ( 9 ) : 511 – 517 .
   PubMed Web of Science ®Google Scholar
• Jasanoff , S. 2005 . Designs on Nature: Science and Democracy in Europe and the United States , Princeton : Princeton University Press .
   Google Scholar
• Knoppers , B. M. 2005 . Neuroethics, new ethics? . American Journal of Bioethics , 5 ( 2 ) : 33
   PubMed Web of Science ®Google Scholar
• Lackey , R. T. 2003 . Pacific Northwest salmon: Forecasting their status in 2100 . Reviews in Fisheries Science , 11 ( 1 ) : 35 – 88 .
   Web of Science ®Google Scholar
• Leshner , A. 2004 . Ethical issues in taking neuroscience research from bench to bedside . Cerebrum , 6 ( 4 ) : 66 – 72 .
   PubMedGoogle Scholar
• Leshner , A. 2005 . It's time to go public with neuroethics . American Journal of Bioethics , 5 ( 2 ) : 1 – 2 .
   PubMed Web of Science ®Google Scholar
• Levidow , L. 1999 . “ Democratizing technology or technologizing democracy? Regulating agricultural biotechnology in Europe ” . In Democratising Technology , Edited by: Von Schomberg , R. 51 – 70 . Hengelo : International Centre for Human and Public Affairs .
   Google Scholar
• Levy , N. 2007 . Neuroethics: Challenges for the 21st Century , Cambridge , , UK : Cambridge University Press .
   Google Scholar
• Longstaff , H. , Burgess , M. M. and Lewis , P. 2006 . Comparing methods of ethical consultation for biotechnology related issues . Health Law Review , 15 ( 1 ) : 37 – 38 .
   PubMedGoogle Scholar
• Longstaff, H., and Burgess, M. M. (2007). Recruiting for representation in public deliberation on the ethics of biobanks. Electronic Working Papers Series. W. Maurice Young Centre for Applied Ethics, University of British Columbia. www.gels.ethics.ubc.ca (Accessed: 20 April 2008 ).
   Google Scholar
• McDonald, M. (2000). Biotechnology, Ethics and Government: A Synthesis. Ottawa: Canadian Biotechnology Advisory Committee. http://cbac-cccb.ca/epic/site/cbac-cccb.nsf/en/ah00438e.html (Accessed: 6 October 2008 ).
   Google Scholar
• Marcus , S. 2002 . Neuroethics: Mapping the Field , Washington , D.C : The Dana Foundation Press .
   Google Scholar
• Meeting of the Minds. (2006). European Citizens' Assessment Report. http://www.meetingmindseurope.org/europe_default_site.aspx?SGREF=16 (Accessed: 20 April 2008 ).
   Google Scholar
• OECD . 2001 . Engaging Citizens in Policy-Making: Information, Consultation and Public Participation , Paris : OECD .
   Google Scholar
• Owen , A. M. , Coleman , M. R. , Boly , M. , Davis , M. H. , Laureys , S. and Pickard , J. D. 2006 . Detecting awareness in the vegetative state . Science , 313 ( 5792 ) : 1402
   PubMed Web of Science ®Google Scholar
• Parens , E. and Johnston , J. 2007 . Does it make sense to speak of neuroethics? Three problems with keying ethics to hot new science and technology . EMBO Reports , 8 ( Spec No ) : S61 – 64 .
   PubMedGoogle Scholar
• Phelps , E. A. and Thomas , L. A. 2003 . Race, behavior and the brain . Political Psychology , 24 : 747 – 759 .
   Web of Science ®Google Scholar
• Racine , E. , Bar-Ilan , O. and Illes , J. 2005 . fMRI in the public eye . Nature Reviews Neuroscience , 6 ( 2 ) : 159 – 164 .
   PubMed Web of Science ®Google Scholar
• Racine , E. , Bar-Ilan , O. and Illes , J. 2006 . Brain imaging: A decade of coverage in the print media . Science Communication , 28 ( 1 ) : 122 – 143 .
   PubMed Web of Science ®Google Scholar
• Reiman , E. M. 2007 . Linking brain imaging and genomics in the study of Alzheimer's disease and aging . Annals of New York Academy of Science , 1097 : 94 – 113 .
   PubMed Web of Science ®Google Scholar
• Roskies , A. 2006 . “ A case study in neuroethics: the nature of moral judgment ” . In Neuroethics: Defining the Issues in Theory, Practice, and Policy , Edited by: Illes , J. 16 – 17 . Oxford , , UK : Oxford University Press .
   Google Scholar
• Rowe , G. and Frewer , L. J. 2005 . A typology of public engagement mechanisms . Science, Technology & Human Values , 30 ( 2 ) : 251 – 290 .
   Web of Science ®Google Scholar
• Safire , W. 2002 . “ Introduction: Visions for a new field of “neuroethics.” . In Neuroethics: Mapping the Field , Edited by: Marcus , S. J. New York : The Dana Press .
   Google Scholar
• Sahakian , B. and Morein-Zamir , S. 2007 . Professor's little helper . Nature , 450 ( 7173 ) : 1157 – 1159 .
   PubMed Web of Science ®Google Scholar
• Sclove , R. E. 1999 . “ Design criteria and political strategies for democratizing technology ” . In Democratising Technology , Edited by: Von Schomberg , R. 17 – 38 . Hengelo : International Centre for Human and Public Affairs .
   Google Scholar
• Secko , D. M. and Burgess , M. M. 2008 . Assessing moral perspectives on the technical application of a fish's DNA: An interview study with salmon genomic researchers . Science Technology and Human Values , (Submitted)
   Google Scholar
• Sherwin, S. (2001). Towards an Adequate Ethical Framework for Setting Biotechnology Policy. Ottawa: Canadian Biotechnology Advisory Committee. http://cbac-cccb.ca/epic/site/cbac-cccb.nsf/vwapj/BioPolicy_Sherwin_e.pdf/$FILE/BioPolicy_Sherwin_e.pdf (Accessed: 6 October 2008 ).
   Google Scholar
• Taylor , P. L. 2007 . Rules of engagement . Nature , 450 ( 7167 ) : 163 – 164 .
   PubMed Web of Science ®Google Scholar
• Timpane, J. (2004). Models for the neuroethical debate in the community, Cerebrum, 6(4): 100–107. http://www.dana.org/news/cerebrum/detail.aspx?id=1218 (Accessed: 20 April 2008 ).
   Google Scholar
• United Nations Economic Commission for Europe . 1998 . Convention on Access to Information, Public Participation in Decision Making and Access to Justice in Environmental Matters , Aarhus : United Nations Economic Commission for Europe .
   Google Scholar
• Webler , T. , Tuler , S. and Krueger , R. 2001 . What is a good public participation process? Five perspectives from the public . Environmental Management , 27 ( 3 ) : 435 – 450 .
   PubMed Web of Science ®Google Scholar