We begin with the premise that human tissue biobanking is associated with ethical ambiguities and regulatory uncertainty, and that public engagement is at least one important element in addressing such challenges. One is then confronted with how to achieve public engagement that is both meaningful and effective. In particular, how can public engagement on the topic of biobanking be implemented so that (a) it is perceived broadly as legitimate and (b) the results of the engagement are relevant and useful to the institutional and regulatory context? In this paper we build on previous work that has addressed the former point and focus primarily on the latter. We argue that one way to increase the likelihood of results of public engagement being taken up in policy is through framing the issues that are deliberated by members of the public based in part on the practical policy questions for which input is sought. In this approach, we move discussion on the social and ethical implications of biobanking from abstract principles, to their consideration in the context of local biobanking practices. This is illustrated using a practical example involving a public engagement conducted to inform institutional policy for biobanking in British Columbia, Canada.

Keywords:
Biobanks, Consent, Deliberative democracy, Framing, Governance, Health research, Policy, Privacy, Public engagement
1.
Burgess M, O’Doherty K, Secko D: Biobanking in BC: enhancing discussions of the future of personalized medicine through deliberative public engagement. Per Med 2008;5:285–296.
2.
O’Doherty KC, Burgess MM: Engaging the public on biobanks: outcomes of the BC Biobank Deliberation. Public Health Genomics 2009;12:203–215.
3.
Brand AM, Probst-Hensch NM: Biobanking for epidemiological research and public health. Pathobiology 2007;74:227–238.
4.
Swen JJ, Huizinga TW, Gelderblom H, de Vries EG, Assendelft WJ, Kirchheiner J, Guchelaar HJ: Translating pharmacogenomics: challenges on the road to the clinic. PLoS Med 2007;4:1317–1324.
5.
Avard D, Bucci LM, Burgess M, Kaye J, Heeney C, Cambon-Thomsen A: Public health genomics (PHG) and public participation: point to consider. J Public Delib 2009;5:7.
6.
Cambon-Thomsen A: The social and ethical issues of post-genomic human biobanks. Nat Rev Genet 2004;5:866–873.
7.
Forsberg JS, Hansson MG, Eriksson S: Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results. Eur J Hum Genet 2009;17:1544–1549.
8.
Swede H, Stone CL, Norwood BA: National population-based biobanks for genetic research. Genet Med 2007;9:141–149.
9.
Gibson E, Brazil K, Coughlin MD, Emerson C, Fournier F, Schwartz L, Szala-Meneok KV, Weisbaum KM, Willison DJ: Who’s minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks. BMC Med Ethics 2008;9:17.
10.
Irwin A: Constructing the scientific citizen: science and democracy in the biosciences. Public Underst Sci 2001;10:1–18.
11.
Jasanoff S: Science and citizenship: a new synergy. Sci Public Policy 2004;31:90–94.
12.
Rowe G, Frewer LJ: A typology of public engagement mechanisms. Sci Technol Human Values 2005;30:251–290.
13.
McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N; Marshfield Clinic PMRP Community Advisory Group: Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. Am J Med Genet A 2008;146A:3026–3033.
14.
Rotimi CLM, Matsuda I, Zeng C, Zhang H, Adebamowo C, Ajayi I, Aniagwu T, Dixon M, Fukushima Y, Macer D, Marshall P, Nkwodimmah C, Peiffer A, Royal C, Suda E, Zhao H, Wang VO, McEwen J: International HapMap consortium: community engagement and informed consent in the international HapMap project. Community Genet 2007;10:186–198.
15.
Foltz F: Five arguments for increasing public participation in making science policy. Bull Sci Technol Soc 1999;19:117–127.
16.
Burgess MM, Tansey J: Democratic deficit and the politics of ‘informed and inclusive’ consultation; in Einseidel E, Parker R (eds): Hindsight to Foresight in Emerging Technologies. Vancouver, UBC Press, 2008, pp 275–288.
17.
Dodds S, Ankeny RA: Regulation of hESC research in Australia: promises and pitfalls for deliberative democratic approaches. Bioeth Inq 2006;3:95–107.
18.
Gottweis H: Emerging forms of governance in genomics and post-genomics: structures, trends, perspectives; in Bunton R, Petersen A (eds): Genetic Governance: Health, Risk and Ethics in the Biotech Era. London/New York, Routledge, 2005.
19.
Castle D, Culver K: Public engagement, public consultation, innovation and the market. Integr Assess J 2006;6:137–152.
20.
Godard B, Marshall J, Laberge C: Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Community Genet 2007;10:147–158.
21.
Bates BR: Public culture and public understanding of genetics: a focus group study. Public Underst Sci 2005;14:47–65.
22.
Einseidel EF: Assessing a controversial medical technology: Canadian public consultations on xenotransplantation. Public Underst Sci 2002;11:315–331.
23.
Walmsley HL: Mad scientists bend the frame of biobank governance in British Columbia. J Public Delib 2009;5:6.
24.
Gastil J: Political Communication and Deliberation. Los Angeles, Sage Publications, 2008.
25.
Dryzek JS, Niemeyer S: Reconciling pluralism and consensus as political ideals. Am J Polit Sci 2006;50:634–649.
26.
Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin FP: Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Soc Sci Med 2003;57:239–251.
27.
Fishkin JS, Laslett P: Debating Deliberative Democracy. Malden, Blackwell, 2003.
28.
Gastil J, Levine P: The Deliberative Democracy Handbook: Strategies for Effective Civic Engagement in the Twenty-First Century. San Francisco, Jossey-Bass, 2005.
29.
Longstaff H, Burgess MM: Recruiting for representation in public deliberation on the ethics of biobanks. Public Underst Sci, in press.
30.
Goodin RE, Dryzek JS: Deliberative impacts: the macro-political uptake of mini-publics. Polit Soc 2006;34:219–244.
31.
MacLean S, Burgess MM: In the public interest: assessing expert and stakeholder influence. Public Underst Sci, in press.
32.
Ankeny RA, Dodds S: Hearing community voices: public engagement in Australian human embryo research policy, 2005–2007. New Genet Soc 2008;27:217–232.
33.
McNamara B, Petersen A: Framing consent: the politics of ‘engagement’ in the Australian biobank project; in Gottweis H, Petersen A (eds): Biobanks: Governance in Comparative Perspective. London/New York, Routledge, 2008.
34.
Petersen A: Biobanks’ ‘engagements’: engendering trust or engineering consent? Genomics Soc Policy 2007;3:31–43.
35.
Irwin A: Constructing the scientific citizen: science and democracy in the biosciences. Public Underst Sci 2001;10:1–18.
36.
Entman RM: Framing: toward clarification of a fractured paradigm. J Commun 1993;43:51–58.
37.
Friedman SM, Dunwoody S, Rogers CL: Communicating Uncertainty: Media Coverage of New and Controversial Science. LEA’s communication series. Vol. xiv. Mahwah, Lawrence Erlbaum Associates, 1999, p 277.
38.
Druckman JN, Nelson KR: Framing and deliberation: how citizens’ conversations limit elite influence. Am J Pol Sci 2003;47:729–745.
39.
Druckman JN: Political preference formation: competition, deliberation, and the (ir)relevance of framing effects. APSR 2004;98:671–686.
40.
Potter J: Representing Reality: Discourse, Rhetoric and Social Construction. London, Sage Publications, 1996.
41.
Watson PH, Wilson-McManus JE, Barnes RO, Giesz G, Png A, Hegele RG, Brinkman J, Mackenzie IR, Huntsman DG, Junker A, Gilks B, Skarsgard E, Burgess MM, Aparicio S, McManus BM: Evolutionary concepts in biobanking – the BC BioLibrary. J Transl Med 2009;7:95.
42.
Young IM: Inclusion and Democracy. Oxford/New York, Oxford University Press, 2000.
© 2010 S. Karger AG, Basel
2010
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.